Digital Commons Network^™

Improving Human Experience In Health Care: Leveraging ``Humanistic Learning Health Systems'' To Accelerate Change At Scale, Brant J. Oliver, Jason A. Wolf

Patient Experience Journal

Included in a special segment in this issue of the Patient Experience Journal, are a series of reports on improving HX in healthcare supported by a humanistic LHS– the Dartmouth Promise Partnership Coproduction Learning Health System in New Hampshire, USA. Promise is a strategic partnership between a medical school and a multi-center rural academic health system. It integrates translational science education and research, data informatics, and scaled and networked humanistic applied change initiatives. One of these initiatives is the Care Experience Collaborative, a multi-center improvement initiative across the health system focused on improving HX. This special segment includes five reports …

Patient Experience (Px) In Low- And Middle-Income Countries (Lmics): A Scoping Review, Yara Abou Harb, Geoffrey A. Silvera

Patient Experience Journal

Patient Experience (PX) is a growing subject in the healthcare industry due to its association with improved clinical outcomes, patient safety, and business motives. While PX is well studied in high income countries, little is known about the state of PX in Low and Middle-income countries (LMICs). Objective: The study aims to examine literature on PX and related concepts in LMICs. Methods: This study executes a PRISMA literature review of academic databases (Ovid Medline, CINAHL, EMBASE and Google Scholar) as well as hand searching of PX related websites from 2005 to 2024. Results: 67 references met search criteria. Four themes …

Nursing Staff Attitude Towards Nurse-Physician Collaboration In The Neonatal Intensive Care Unit In Al Ahsa City, Saudi Arabia, Makarim Taqi Al Helal, Yaqoub Yousef Al Mousa

Patient Experience Journal

Objective: Effective nurse-physician collaboration is fundamental to ensuring quality healthcare delivery, particularly in Neonatal Intensive Care Units (NICUs), where patient outcomes rely heavily on coordinated teamwork. This study aimed to assess nursing staff attitudes toward nurse-physician collaboration in NICUs, examine the influence of demographic and professional characteristics, and provide evidence-based recommendations to strengthen interprofessional collaboration. Methods: A quantitative, non-experimental, cross-sectional survey was conducted from April to June 2024 in the NICU of Maternity and Children's Hospital, Al Ahsa, Saudi Arabia. A total of 180 nurses with at least one year of NICU experience participated. Data were collected using the …

System-Level Barriers To Patient Engagement With Electronic Medical Records, Corey Adams, Reema Harrison, Guncag Ozavci, Kathleen Gray, Nilmini Wickramasinghe, Vicky Yuan, Tracey Bucknall, Elizabeth Manias

Patient Experience Journal

Objective: Electronic medical records (EMRs) can support patient-centered care, but system-level barriers often limit how patients engage with EMR systems. This study explored the system-level barriers and enablers to patient engagement with EMRs from the perspectives of healthcare leaders. Methods: Semi-structured interviews were conducted with 20 participants in senior EMR-related roles across healthcare organizations in two Australian states. Data were analyzed using reflexive thematic analysis to identify key system-level influences on patient engagement. Results: Seven themes were identified: 1) EMRs for digital storage, not connection, 2) Privacy rules create challenges to accessing information, 3) Communication barriers when using EMRs, 4) …

Virtual Caregiving And The Evolving Role Of Carers And Patients: Virtual Hospital Interview Analysis, Kanesha Ward, Tim Jackson, Jenna Bartyn, Shannon Saad, Sue Amanatidis, Owen Hutchings, Annie Y.S. Lau

Patient Experience Journal

Virtual hospitals are transforming healthcare by enabling remote monitoring and management of patients, improving accessibility and care continuity. As part of the transformation, there are changes to the roles and responsibilities of patients and their carers as they engage in virtual hospital care. The impact on family caregiving remains underexplored. Guided by Family Systems Theory, this qualitative study investigated how family caregiving roles adapt within a virtual hospital and identified opportunities to further support families. Semi-structured interviews were conducted with patients, carers, and healthcare workers from one model of care, at a metropolitan virtual hospital in New South Wales, Australia. …

Leveraging Digital Patient And Family Advisory Councils To Drive Patient Engagement, Priya Radhakrishnan, Shambhavi Mishra, Melissa Price, Cammy Sanders, Fiker Bekele, Kathi Zarubi, Craig Kartchner, Amrit Singh Johal, Carol Mayer, Craig Norquist

Patient Experience Journal

Patient and Family Advisory Councils (PFACs) have been integral in enhancing patient care, but their limited reach often excludes underrepresented populations. Digital PFACs present an opportunity to overcome these barriers and engage a broader spectrum of patients and families, fostering more inclusive healthcare decision-making. We implemented a Digital Patient and Family Advisory Council (DPFAC) at HonorHealth, as part of the Patient Centered Outcomes Research Institute (PCORI) capacity building grant. We used the RE-AIM and PRISM frameworks to engage participants through a digital platform. The process began with a needs assessment and was followed by the development of the platform, during …

Supporting Families Of Children With Craniosynostosis: A Qualitative Exploration Of Parental Usage Of Online Forums, Elisha L. Rea, Rachel M. Roberts, Amanda J. Osborn

Patient Experience Journal

Objective: Craniosynostosis is characterised by the early fusion of cranial sutures, resulting in an abnormal head shape. This study examines the psychosocial impact of a child's craniosynostosis diagnosis on families, by analysing online forum discussions. While surgery is often needed to address appearance-related and neuropsychological concerns, parents face challenges navigating their child's diagnosis. Many seek support through online forums, yet research on their experiences remains limited. This study aims to understand parental needs and experiences by analysing forum discussions. Method: Online forums were analysed using reflexive thematic analysis. Significant features of the data were systematically coded and themes reflecting …

Validation Of A Copd Patient-Reported Experience Measure (Prem-C9) In Ontario, Canada, Elaine Zibrowski, Floriana Islami, Alyson Kellar, Christopher Licskai, Madonna Ferrone, Shannon L. Sibbald

Patient Experience Journal

Objective: Patient-reported experience measures (PREM) are important tools for evaluating healthcare quality, yet their implementation in chronic obstructive pulmonary disease (COPD) care within Canada remains limited. Our objective was to examine the construct validity of the PREM-C9 instrument in a Canadian context and explore its potential clinical applications beyond measuring patient experience. Methods: A two-phase, prospective, cross-sectional, mixed-methods study was conducted across 41 Best Care COPD sites in Ontario, Canada. In the quantitative phase, confirmatory factor analysis assessed the construct validity of the PREM-C9. In the qualitative phase, focus group interviews with COPD case managers explored implementation experiences and perceived …

Development And Psychometric Assessment Of The Sub-Scales Of The Ontario Perception Of Care Tool For Mental Health And Addictions (Opoc-Mha), Brian Rush, Karen Urbanoski

Patient Experience Journal

Historically, the tools designed to measure of ``patient satisfaction'' or ``perception of care'' have been developed and evolved separately for the mental health and substance use health sectors. This presents challenges for implementation and usefulness of the results for quality improvement and evaluation given recent efforts aimed at more integrated services and systems. The objective of this study was to psychometrically evaluate eight domain-specific sub-scales of a perception-of-care tool developed specifically for mental health, substance use and/or concurrent disorder services - the OPOC-MHA. The development and process for widescale implementation of the OPOC-MHA has resulted in a large provincial dataset …

Inaccessibility And Performative Inclusivity: Higher-Weight Francophone And Newcomer Adults' Experiences In A Canadian Atlantic Province, Andrea E. Bombak, Norma Chinho, Kathleen O'Keefe, Sumaiya Akhter, Lisa Thomson, Courtney Burk, Lee Turner

Patient Experience Journal

Weight stigma research is needed in diverse populations. Two populations that may experience compromised healthcare in New Brunswick, Canada's only officially bilingual province (English/French), are Francophone New Brunswickers and newcomers to Canada. As such, this study explores the experiences of higher-weight (Body Mass Index ≥ 30) adults (≥ 18 years of age) who also identify as primarily Francophone or as having moved to Canada ≤ 5 years ago in and out of healthcare contexts. Participants were interviewed according to a semi-structured interview guide face-to-face, by telephone, or video-call two times, at 2-to-3-month intervals. Interviews included questions about experiences and effects …

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

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 …

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

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

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 …

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 …

Abortion Politics And Policy: Stigma And Access In The Silver State, Celene Fuller

Lincy Institute Events

In the aftermath of the Supreme Court’s Dobbs v. Jackson Women’s Health Organization (2022) overturning Roe V. Wade, states have taken divergent paths in regulating access to abortion services. In 2024, Nevada voters overwhelmingly passed Question 6 proposing to codify abortion rights into the state constitution. In November 2026, Question 6 will again be on the ballot for final confirmation. If it passes, these rights will be protected from future legislative action.

Despite Nevadans’ strong support for abortion rights, the state’s dearth of abortion providers limits access to these services. As this lecture explores, both providers and individuals seeking abortions, …

Staff Educational Impact On School-Based Mental Health Services: A Scoping Review, Daniel J. Kim, Di'yana Fisher, Laura Reed Dnp, Aprn, Fnp-Bc, Cne, Fnap

Doctor of Nursing Practice Projects

Purpose/Background

            Trends are consistently increasing among adolescents in regard to mental health diagnoses and suicide risks, which emphasizes the necessity for early identification via school-based psychiatric screenings. The Patient Health Questionnaire-9 (PHQ-9) has proven effective in uncovering symptoms of depression; variable application and limited staff knowledge continue to be substantial hurdles. This scoping review examined the influence of staff education and training on the efficacy of school-based psychiatric screening.

Methods

            PubMed, CINAHL, Medline, Elsevier, Google Scholar, and JAMA were utilized to conduct this scoping review. Peer-reviewed studies published between 2020 and 2025 were included if they involved adolescents aged 13-18, …

Prenatal Care Access And Pregnancy Outcomes Among Black Women Ages 15–44 In Cook County, Illinois, Deandrea Heggins

Walden Dissertations and Doctoral Studies

Maternal health disparities affecting Black women in the United States remain a persistent public health concern due to inequities in prenatal care access and adverse birth outcomes. Prior research has shown that socioeconomic conditions, insurance coverage, and systemic barriers influence prenatal care utilization and maternal outcomes; however, limited research has examined how Medicaid coverage, household income, preterm birth, and birth weight are collectively associated with prenatal care access among Black women in Cook County, Illinois. The purpose of this quantitative correlational study was to examine the relationships among these factors and access to prenatal care among Black women ages 15–44 …

Cross-Sectional Associations Of Metabolically Healthy Obesity, Lifestyle Factors, And Steatotic Liver Disease In Adults From The Fels Longitudinal Study, Ariana L Garza, Audrey C Choh, John Blangero, Cici X Bauer, Stefan A Czerwinski, Miryoung Lee

Faculty, Staff and Student Publications

Objective: To examine the associations of metabolic health and obesity phenotypes with liver fat accumulation and hepatic steatosis in adults.

Methods: We analyzed 676 non-Hispanic white adults (18-95 years; 55.8% female) from the Fels Longitudinal Study using a cross-sectional design. Participants were classified into metabolically healthy normal weight (MHNW), metabolically healthy obesity (MHO), metabolically unhealthy normal weight (MUNW), and metabolically unhealthy obesity (MUO) phenotypes. Metabolically unhealthy status was defined as the presence of ≥1 metabolic dysfunction, consistent with prior epidemiological definitions; secondary analyses using ≥2 were also performed. Obesity was defined using DXA-derived body fat percentage. Liver fat (%) was …

Serum Metabolites Associated With Depression And Anxiety In The Hispanic Community Health Study/Study Of Latinos, Xinye Qiu, Yu Zhang, Yogesh Purushotham, Qibin Qi, Bing Yu, Jan Bressler, Krista M Perreira, Humberto Parada, Martha L Daviglus, Alejandra Cid Vega, Carmen R Isasi, Linda C Gallo, Tamar Sofer

Faculty, Staff and Student Publications

Omics signatures for psychiatric conditions have been under-investigated. In this study, we used data from a representative observational cohort study of Hispanic/Latino adults to identify serum metabolites associated with symptoms of depression or anxiety and to develop and assess metabolite risk scores (MRSs) of these phenotypes. We conducted a metabolome-wide association study of 768 metabolites with depression and anxiety symptoms, using two separate assay batches measured from baseline samples collected between June 2008 and July 2011 for discovery (batch 1: n = 4002 adults) and replication (batch 2: n = 2178 adults). We estimated the associations via survey-based generalized linear …

Barriers Asian Adoptees Face In Screening For Inheritable Conditions Due To A Lack Of Family Medical History, Anna Shea

Honors Projects

Adoption has been increasingly common in the United States, with more than 7.8 million people in the United States adopted (Wexler et al., 2025) and over 280,000 children in the United States adopted internationally (Orr et al., 2024). Despite this, those who are adopted, especially internationally, often face medical disadvantages compared to those biologically related to their family. The differences in treatment between adoptees and those who are biologically related are largely due to the knowledge, or lack of knowledge, of the individual’s family medical history and genetic information. Genetic or inherited disease screening is often only completed or covered …

Improving Identification And Referral Of Xylazine‑Associated Wounds In Homeless Healthcare, Ramon A. Gambino

Doctor of Nursing Practice Scholarly Projects

Background: Xylazine-adulterated fentanyl is linked to distinctive necrotic wounds and complex care needs in unsheltered populations. This quality improvement (QI) project implemented a brief survey and referral log at Albuquerque Health Care for the Homeless (AHCH) to track suspected xylazine-associated wounds and referrals to advanced care. Methods: Final data were exported from Qualtrics, cleaned to retain finished responses, standardized categories, and de-identified. The analytic sample included 18 encounters. Results: Results showed that 55.6% (n = 10) documented suspected xylazine-associated wounds; 5.6% (n = 1) reported no suspicion; 38.9% (n = 7) were uncertain. Referrals were rarely documented overall at AHCH …

Examining The Psychometric Properties Of The Big Three Perfectionism Scale–Short Form (Btps-Sf) Among Malaysian Chinese Students At A Private University, Kam-Fong Lee, Ashraf Sadat Ahadzadeh, Shin Ling Wu

Makara Journal of Health Research

Background: Perfectionism is increasingly prevalent among young adults and is a significant predictor of pathological and behavioral outcomes. Despite its relevance, validated and reliable measures of perfectionism tailored to university students, particularly within the Malaysian cultural and academic context, are lacking. This study addresses this gap by examining the psychometric properties of the BTPS-SF among Chinese students at a private university in Malaysia.

Methods: Data were collected using a cross-sectional design with convenience and snowball sampling from 380 students aged 18–25 years, predominantly from a Chinese student population.

Results: The results of the exploratory factor analysis, conducted …

Questionnaire For Eudaimonic Well-Being: Psychometric Validation Among Malaysian Youth, Mohd Ahsani A. Malek, Nurulwahida Saad, Suzana Mohd. Hoesni, Muhamad Ariff Ibrahim, Nurul Shafira Adi, Mohd Nazir Mohd Nazori

Makara Journal of Health Research

Background: The rising prevalence of mental illness underscores the need to understand how individuals can live and flourish under such conditions. In Malaysia, research has largely emphasized diagnosis and treatment, with limited focus on positive psychology and few validated instruments. This study aimed to translate and validate the questionnaire for eudaimonic well-being (QEWB) among Malaysian youth.

Methods: The QEWB was translated into Malay using back-to-back translation and administered to undergraduates from four public universities through a cross-sectional survey design. Convenience quota sampling was used, resulting in 229 respondents completing the online form to measure sociodemographic characteristics, eudaimonic well-being, …

Identifying Delays Impacting Maternal And Perinatal Deaths Using A Facility-Based Death Audit Review System Integrated With Community Engagement: A Mixed Methods Study, Zahid Memon, Wardah Ahmed, Shah Muhammad, Sajid Soofi, Shanti Chouhan, Arjumad Rizvi, Paul Barach, Zulfiqar A. Bhutta

College of Population Health Faculty Papers

BACKGROUND: Pakistan's persistently high maternal (178 per 100 000 livebirths) and neonatal (41 per 1000 livebirths) mortality ratios are compounded by lack of reliable data on the root causes and preventable risk factors, which hinders their effective use in improving care and progress toward safe, high-quality services. We sought to identify system delays impacting maternal and perinatal deaths using a facility-based death audit review system integrated with community engagement for implementing actionable solutions.

METHODS: We used a mixed methods, concurrent parallel study design at three secondary level healthcare facilities in District Matiari, Sindh, Pakistan. We reviewed 319 cases that included …

Rhode Island Right To Life: Veritas Grant Funded Internship Summer 2025, Ekaterina Rau

Biology Student Scholarship

No abstract provided.

From Data To Action: Enhancing Public Health Communication & Information Dissemination, Ryan Hayden, Devon Donovan

Health Sciences Student Scholarship

No abstract provided.

Perceived Inadequate Neighborhood Food Shopping And Cardiovascular Disease Risk: The Multi-Ethnic Study Of Atherosclerosis, Amier Haidar, Ghadi Ghanem, Rishi Rikhi, Karol E Watson, Shreela V Sharma, Michael D Shapiro

Faculty, Staff and Student Publications

Background: Individuals with access to healthy food have healthier diets, improved cardiometabolic risk profiles, and decreased cardiovascular disease (CVD). However, previous studies have focused on the neighborhood food environment as distance to and density of food retailers. Our study examines the association between an individual's perceived adequacy of neighborhood food shopping and incident CVD.

Methods: We analyzed data from 6814 participants in the MESA (Multi-Ethnic Study of Atherosclerosis), a prospective cohort study of individuals aged 45 to 84 who were enrolled in the study between 2000 and 2002 and followed longitudinally. Cox proportional hazards models estimated hazard ratios (HRs) for …

Cervical Cancer Screening Among Women Across The United States, Srivathsan Vijaya Raghavan

Walden Dissertations and Doctoral Studies

While cervical cancer is not among the most frequently diagnosed cancers in the United States, it remains a significant concern due to its preventability through regular Pap smears and Human Papillomavirus (HPV) vaccination. However, incidence rates are rising as screening participation among U.S. women declines. This quantitative study (N = 15714) explored cervical cancer screening behaviors by analyzing levels of community involvement and social functioning, guided by the socioecological model (SEM). The dependent variable was cervical cancer screening, while the independent variables were community involvement and social functioning. The study controlled for health insurance status, age, race, ethnicity, employment, education, …