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Special Issue – July 2021 The Impact Of Inequity & Health Disparities On The Human Experience, Patient Experience Journal

Patient Experience Journal

Patient Experience Journal (PXJ) is excited to announce the call for submissions for its July 2021 special issue on the impact of racial inequality, health disparities, and discrimination on the human experience. The world now finds itself in the grips of a global pandemic that is taking its toll on communities socially and economically, placing strain on healthcare workers and revealing the very systemic weaknesses and inherent biases that have been resting just beneath the surface of our society for years. The challenge of disparity and inequity is not unique to healthcare, but in the era of COVID-19, what many …

Nursing Leadership During Covid-19: Enhancing Patient, Family And Workforce Experience, Anne Aquilia, Karen Grimley, Barbara Jacobs, Maryellen Kosturko, Jerry Mansfield, Charlotte Mathers, Peggie Parniawski, Laura Wood, Victoria Niederhauser

Patient Experience Journal

The global COVID-19 pandemic has challenged nurse leaders in ways that one could not imagine six months ago. Along with ongoing priorities of providing high quality, cost-effective and safe care, nurse leaders are also committed to creating environments that support excellence in patient and family experience. This article will provide exemplars of how nurse leaders used decisive decision-making, adapted to novel situations and issues, ensured reliable and safe delivery of care and engaged patients, families and their workforce to create excellent experiences of care during the pandemic. Throughout this crisis, nurse leaders have learned how to grapple with quick and …

Johns Hopkins Medicine Responds To Covid-19: Adjusting Patient- Family- And Staff-Centered Care, Stacy L. C. Colimore, Lisa Allen, Zach Lawrence, Nicole Iarrobino, Sylvia Kavouriou, Adey Betre, Chevaunne Edwards, Amel Elshinawi, Lisa Filbert, Tameka Glenn, Jade Hewitt, Lisa Jibril, Brittney Lawrence, Ariel Mabry, Deborah Miller, Nicole Pritchett, Heather Webb

Patient Experience Journal

The extraordinary impact of the novel coronavirus disease 2019 (COVID-19) on the health care industry included a major, nearly immediate paradigm shift in the visitation policy for Johns Hopkins Medicine. This large health system, comprising six hospitals, a home care group, community physician practices and satellite outpatient sites moved from essentially open visitation to no visitation, creating an entirely new set of needs for our staff, patients and their loved ones. We developed new ways of communicating and connecting staff members, staff and patients, staff and the patient’s loved ones, and patients and their loved ones. Our intent was to …

Family Connect: Keeping Families Informed During The Covid-19 Pandemic, Brittany Branson, Anne K. Wilkinson, Jaya Sondhi, Irma Dadic, Devin M. Giguere, Rachel Ramsey, Regina Grinblat, Katherine A. Hochman

Patient Experience Journal

Family Connect programs to enhance communication with families and care partners who were unable to visit their inpatient loved ones during the COVID-19 crisis. While they differed in composition, the Family Connect programs at both institutions leveraged providers who had decreased clinical activity during the pandemic. The Family Connect team became integrated with the team. At both institutions, Family Connect teams perform virtual chart review, discuss patient status and care plan with the primary provider and communicate with the patient’s designated family member or care partner daily. Conversations are documented in the electronic medical record (EMR), which allows for metric …

Maintaining A Positive Patient Experience During Covid-19 In A Rehabilitation And Complex Care Setting, Sarah Benn Orava, Kim Cook, Amanda Brown

Patient Experience Journal

West Park Healthcare Centre located in Toronto, Ontario, Canada provides specialized rehabilitative and complex care after a life‐altering illness or injury such as lung disease, amputation, stroke and traumatic musculoskeletal injuries. This narrative showcases the strategies, processes and the lessons learned and subsequently utilized throughout the COVID-19 pandemic to engage patients and their family and peers.

Experience Framework

This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework)

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Patients And Families Strengthen Covid-19 Communication Across Los Angeles County, Lindsey Galli, Libby Hoy

Patient Experience Journal

PFCCpartners supported Los Angeles County Department of Health Services to develop a Person Family Engaged Culture. When COVID-19 hit Los Angeles, system leaders understood the importance of keeping a pulse on what information people were looking for. With the continued support from PFCCpartners, a survey of community members was conducted to understand their questions during this unprecedented time. The survey highlighted barriers to accessing supplies, refilling prescriptions and using technology for virtual appointments. Utilizing the survey questions, a small group discussion was held to deepen understanding of the barriers and challenges faced during the pandemic. These two engagement activities ensured …

Out Of Sight, But Not Out Of Mind: Keeping Connections Alive During Covid-19, Katie Braun

Patient Experience Journal

The Veteran Affairs Pittsburgh Healthcare System (VAPHS) completed over 750,000 outpatient appointments during fiscal year 2019. With changes occurring around COVID-19, VAPHS saw a significant decline in veterans on campus. VAPHS employees are strongly connected to the mission of serving our nation’s hero’s, while veterans find trust, support and comradery at the VA. The VAPHS Office of Veterans Experience (OVE) realized the impact that COVID-19 isolation may have on veterans quarantined at home and seized the opportunity to continue to build relationships, develop trust and keep connected through the VAPHS Birthday Club. Over 1,300 calls have been placed to provide …

A Comprehensive Call Center Supporting Safe, Efficient Operations During A Pandemic, Janice P. Finder, Ashlyn Proske, Judy Overton, Elizabeth Comcowich Garcia, Michael Frumovitz

Patient Experience Journal

Research has shown that a comprehensive call center can support a safe, efficient, and quality experience for patients and their families. When a patient receives a cancer diagnosis, the stakes are already high. Add a pandemic to an immunocompromised patient population and fear escalates. In order to accommodate the ever-changing information and ease patients’ anxieties surrounding their cancer diagnoses, it is necessary that an institution be available 24/7 to inform, help navigate systems, and manage symptoms because the emergency room, and many times the clinics, have too many inherent risks.

MD Anderson expanded the hours of operation for askMDAnderson, a …

How University Of Chicago Medicine Designed Virtual Rounding To Maintain Human Connections During Covid-19, Susan M. Murphy

Patient Experience Journal

This story is about how the Patient Experience and Engagement Program (PEEP) team at University of Chicago Medicine adapted our patient rounding program from in-person to virtual during the COVID-19 crisis. With creativity and ingenuity, our team shifted on a dime to ensure that patients received the kind of care and connection that allowed them to start the recovery process from what could otherwise be a traumatizing experience before they even leave the hospital. I will explain the steps we took to quickly transition our rounding program from in-person to virtual. But more than that, I want to convey the …

A Covid-19 Patient’S Experience: Engagement In Disease Management, Interactions With Care Teams And Implications On Health Policies And Managerial Practices, Lihua Dishman, Vicki Schroeder

Patient Experience Journal

This narrative inquiry aimed to explore a COVID-19 patient’s lived experience from contracting the disease to recovery and understand the implications of this unique patient experience on health policies and managerial practices. The personal narrative approach was used to chronicle the patient’s weekly journey in disease management. Best practices emerged from her and her family members’ engagement in managing COVID-19, and interactions with her primary care provider and COVID-19 Response Team. Her COVID-19 patient experience also provided a basis for implications on public health and healthcare policies and managerial practices. Three key dimensions were perceived to have positively impacted the …

Chronic Pain, Vulnerability And Human Spirit While Living Under The Umbrella Of Covid-19, Richard B. Hovey Dr., Delane Linkiewich Ms., Mary Brachaniec Ms.

Patient Experience Journal

The purpose of writing this article is to describe what added challenges people like us who are living with chronic pain are experiencing during the COVID-19 pandemic. We explore what this challenging time means to us and how it affects our lives, along with providing insight into our experiences. This is not a research study, but instead an article that shares perspectives from people with lived experience of chronic pain. Our narratives are presented to create an awareness of the plight for people already living with challenging health conditions and how the COVID-19 pandemic has added additional layers of vulnerability. …

Caring For Kids In The Time Of Covid-19, Laurie S. Strongin

Patient Experience Journal

The proliferation of COVID-19 has disrupted tens of millions of children’s lives. Aside from the monotony of living indoors for extended periods, being quarantined can cause feelings of helplessness, anxiety, and fear in kids and parents. These feelings are familiar to chronically ill children whose treatment often necessitates years in and out of hospitals, but COVID-19 has made life harsher for these kids. While otherwise healthy children tend to have milder symptoms than adults, the same isn’t true for kids with compromised immune systems. Keeping these children safe requires hospitals to make adjustments that exacerbate their isolation from everything they …

A Commitment To Hope, Jason A. Wolf Phd, Geoffrey A. Silvera

Patient Experience Journal

On April 1, we made the decision to reconfigure our scheduled special issue on Behavioral Health to the topic of this issue - Sustaining a Focus on Human Experience in the Face of COVID-19. In the midst of crisis, we were uncertain how people would respond to this call or even if they could in the face of the realities they were addressing each day. Yet, the research, cases and stories started to arrive. The contributions in this special issue represent a patchwork of powerful insights and a historic record to document this moment. What we have brought together …

Special Issue – July/August 2020: Sustaining A Focus On Human Experience In The Face Of Covid-19, Patient Experience Journal

Patient Experience Journal

At this critical time in our shared history, we are faced with a powerful challenge, the rapid impact of COVID-19 on our healthcare systems and community. With that acknowledgement, we are refocusing our 2020 special issue of Patient Experience Journal (PXJ) to address Sustaining a Focus on Human Experience in the Face of COVID-19. Submissions received for our initially planned special issue on patient & family experience in behavioral health will remain in review and consideration for future issues of PXJ.

There are heroic efforts taking place minute-by-minute to address the clinical and personal needs of patients, while also …

Patient Experience Journal Awards: Celebrating Our 2019 Recipients, Patient Experience Journal

Patient Experience Journal

In association with The Beryl Institute, Patient Experience Journal introduced the inaugural Patient Experience Journal (PXJ) Awards. The annual awards celebrate important contributions to the literature and articles of impact in research and practice. They also introduce groundbreaking authors who are working to expand evidence and insights on patient experience and the human experience in healthcare. The winners are selected from the articles published in PXJ and chosen by the Editorial Board of the journal. The award categories are shared and recipients introduced.

Development And Reliability Of A Patient Experience Inventory Tool For Hospitals, Agnes Barden, Nicole Giammarinaro, Natalie Bashkin, Larry Lutsky

Patient Experience Journal

This study explores the development and reliability testing of the newly developed Patient Experience Inventory for Hospitals (PXI-H). Created as an organizational self-assessment patient experience tool, it guides healthcare leaders in evaluating attitudes and behaviors as well as structures and programs impacting patient experience within a hospital setting. The PXI-H is organized within four pillars: Leadership, Education and Development, Data and Analytics and Patient-and-Family Centeredness, which were determined to be internally consistent based on examining coefficient alphas and the item-total correlations. Principal component analysis also determined items with highest loadings aligned onto the pillars in which there were assigned, confirming …

Implementing Inter-Professional Patient-Family Centered Plan Of Care Meetings On An Inpatient Hospital Unit, Nicolas Hernandez, Alice Fornari, Sage Rose, Leanne Tortez

Patient Experience Journal

Inpatient plan of care meetings support efforts to encourage collaborative practice and patient-family centered care and result in an effective strategy to enhance communication and patient satisfaction. Clinical team members participated in patient/family centered plan of care meetings at a community hospital in a selected inpatient unit with full time hospitalist physicians. Quantitative data were gathered pre/post implementation from the external Hospital Consumer Assessment of Health Care Providers (HCAHPS) survey. HCAHPS data were collected independently, specifically for questions related to communication between patients, family members/guardians and the medical team and also the effects of care transition. There was a slow …

Is There A Correlation Between The Patient-Doctor Relationship Questionnaire And Other Patient-Reported Experience Measures?, Amanda I. Gonzalez, Joost T.P. Kortlever, Léon Rijk, David Ring, Laura E. Brown, Lee M. Reichel

Patient Experience Journal

Patient reported experience measures (PREMs) can quantify the quality of the patient-clinician relationship, which is associated with adherence and improved health. However, the scales used to assess PREMs have large ceiling effects, which limits our ability to learn and improve. This study assessed the correlation of four PREMs: the patient-doctor relationship questionnaire (PDRQ), a measure of perceived empathy, a measure of satisfaction with the visit, and a measure of communication effectiveness. We also assessed ceiling effects. We prospectively enrolled 103 new and return patients in this cross-sectional study. Patients completed a demographic questionnaire, the PDRQ, Jefferson Scale of Patient Perceptions …

Using Shared Mental Models To Conceptualize Patients As Professionals, Decision-Makers, Collaborators, And Members Of Interprofessional Healthcare Teams, Umair Majid

Patient Experience Journal

Patient engagement has become the buzz-phrase of 21^st Century health care. Around the world, healthcare systems involve patients in a wide range of activities including drug development, research, and policy design. There are strong institutional pressures for patient engagement in healthcare activities that have been bolstered by ethical imperatives and social and organizational benefits from patient engagement. There is a trend to center efforts to cultivate engagement initiatives that are meaningful to patients and family. However, these efforts are characterized by multiple challenges, for example, tokenism and the lack of organizational support. These barriers may persist in healthcare professionals’ …

Paying It Forward: A Cancer Survivor And His Wife Share Their Reflections And Recommendations As A Patient And Caregiver, Justin Sandler

Patient Experience Journal

I grew up in the north suburbs of Chicago and had a relatively normal childhood but not necessarily an easy one. Shortly after graduating from Indiana University, I moved out west and have been working in the entertainment industry ever since. My life has been a beautiful and interesting adventure with twists and turns I could have never predicted.

In 2016 it seemed like everything was really coming together. I had been happily married to my wife and business partner Mary Lou Sandler since 2011, and we had been growing our photography/film production studio for as many years. I was …

The Essential Nature Of Experience In A Time Of Crisis And Beyond, Jason A. Wolf

Patient Experience Journal

As we have engaged with community members around the world, the last few weeks have provided a unique window into the face of this crisis as we have seen not only the deadliest days on record, but have also had some of the most hopeful conversations at the same time. While we are and still will face challenges in the weeks to come, we too have seen humanity elevated in profound and powerful ways. While it can be offered with little argument that things will never be the same, in moving forward, we too can assert and I believe, that …

Are You My Doctor? Utilizing Personalized Provider Cards To Improve Patient/Doctor Connections, Jessica Colyer, Tina Halley, Melissa Winter, Jennifer Coldren, Martha Parra

Patient Experience Journal

In the setting of large, multidisciplinary medical care teams, it can be difficult for patients and families to identify their primary providers in the inpatient hospital setting. A review of our institutional patient satisfaction scores reflected a low rating with respect to families identifying their provider. We sought to improve patient and family connections with front line providers using personalized provider cards. We developed trading cards with pictures and biographies of the doctors on each card as well as an explanation of provider roles. The cards were piloted on a single inpatient unit without trainees. We had great provider engagement …

Effect Of Change In The Cg Cahps Survey Instrument Recall Period On Patient Experience Scores On Healthcare Utilization, Kimberley Marshall-Aiyelawo Phd, Usn, Msc (Ret), Richard Bannick Phd, Usaf, Msc (Ret), Sharon Beamer Aud, Melissa Gliner Phd, Terry Mcdavid Ms, Daniel Muraida Phd, Janice Ellison Usaf Nursing Services (Ret), Beatrice Abiero Phd, Alan Roshwalb Phd, Mark Andrews

Patient Experience Journal

Standardized patient experience survey instruments play an important role in informing healthcare quality and process improvement. However, any changes in standardized instruments can impact the interpretation, trending, and analysis of patient reported data. This study investigates how the change in Clinician and Group Consumer Assessment of Healthcare Providers and Systems (CG CAHPS) survey recall period, from 12- to 6-months, can impact the accuracy and quality of patient experience data. This study used primary survey data on patient experience collected in 2016. Analyses included tests of proportion and t-tests for a comparison of: 1) experience ratings, and 2) administrative data to …

Volunteer Contributions In The Emergency Department: A Scoping Review, Sophie Glanz, Brittany Ellis, Shelley L. Mcleod, Cameron Thompson, Don Melady, Michelle Nelson

Patient Experience Journal

The objective of this scoping review was to identify published and unpublished reports that described volunteer programs in the emergency department (ED) and determine how these programs impacted patient experiences or outcomes. Electronic searches of Medline, EMBASE, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews and CINAHL were conducted and reference lists were hand-searched. A grey literature search was also conducted. Two reviewers independently screened titles and abstracts, reviewed full text articles, and extracted data. The search strategy yielded 4,589 potentially relevant citations; 87 reports were included in the review. Volunteer activities were categorized as non-clinical tasks …

Conceptual Frameworks And Degrees Of Patient Engagement In The Planning And Designing Of Health Services: A Scoping Review Of Qualitative Studies, Umair Majid, Anna Gagliardi

Patient Experience Journal

Increasingly, patients are being recognized as essential partners in the solutions to healthcare system problems. Patient engagement has been referred to as the “holy grail” and next “blockbuster drug” of health care because it may be revolutionary for transforming the design, delivery, and responsiveness of health services. Patients engage in a variety of healthcare activities, and there are multiple frameworks that depict the degrees of patient engagement in these activities. The literature also uses a variety of terms and concepts to depict the degrees of patient engagement. Moreover, meaningful patient engagement is a concept widely utilized in the literature without …

Patient-Initiated Second Opinions During Acute Hospital Care, Roni Gagin, Neta Hagani, Esti Zigelboim, Shiri Shinan-Altman

Patient Experience Journal

Second opinions are used in medicine in order to make better-informed decisions. Only a few studies have examined patient-initiated second opinions, and even fewer have examined it in the context of acute hospitalization. It is not clear whether patients and families are aware of this right and how often they exercise it during acute hospitalization. The objective of this paper is to identify factors associated with the awareness and utilization of patient-initiated second opinions. A survey was conducted among 92 neurosurgical patients who completed a questionnaire that included information regarding: awareness of second opinion consultations, reasons for not seeking a …

Service User Interview Panels For Recruitment To Uk Child And Adolescent Mental Health Services: A Questionnaire Study Exploring The Experiences Of Young People, Staff And Candidates, Sophie M. Allan Ms, Emma Travers-Hill Dr

Patient Experience Journal

Service user involvement is increasingly important in health and social care policy, including in Child and Adolescent Mental Health Services (CAMHS), but evidence evaluating involvement initiatives is lacking. This questionnaire study evaluated the use of young people’s (YP) interview panels in the recruitment of CAMHS staff, from the perspectives of YP, candidates and members of the staff interview panels. Self-report questionnaires were administered to YP, candidates and staff interview panel. This included quantitative and qualitative “free text” responses. YP’s panels were found to be important in hearing the voices of YP; participants all stated they would like YP to take …

From Diagnosis To Routine Care In Type 1 Diabetes In Children: Parents’ Experiences, Géraldine Heilporn, Maude Laberge, André Côté, Monia Rekik

Patient Experience Journal

Having a child who lives with a Type 1 Diabetes (T1D) can represent a high burden for parents. The objective of our study is to identify and analyze the main challenges expressed by parents so that health care services better meet the needs of parents of T1D children. Semi-structured interviews were conducted with parents of 19 T1D children regarding detection and diagnosis, initial management at the hospital, post-discharge adaptation including daycare or school reintegration, and long-term T1D monitoring. Data analysis was performed following an inductive approach. The results showed a lack of knowledge regarding T1D in the society, especially for …

Refugees' Perceptions Of Primary Care: What Makes A Good Doctor's Visit?, Anne Mutitu, Bev Zabler, Jeana M. Holt

Patient Experience Journal

Redesigning primary care is a national priority, as the United States (US) struggles with issues of poor access, high cost, and suboptimal quality. Refugees are among the populations who suffer from America’s disjointed health care system, resulting in disproportionate health disparities. Although there are many studies on refugee health, few share refugees' perceptions of primary care. We asked local refugees who were seen for primary care services at a midwestern academic nurse-led clinic, what makes a good doctor's visit?  The clinic served as the hub of a federally funded refugee Community Centered Health Home (CCHH) pilot project. This qualitative study …

Engaging Under- And/Or Never-Engaged Populations In Health Services: A Systematic Review, Lesley Moody, Erica Bridge, Vidhi Thakkar, Naomi Peek, Tanvi Patel, Suman Dhanju, Simron Singh

Patient Experience Journal

Patient engagement is a mechanism used to facilitate person-centred care, however, has not been realized in all patient populations. Often, many marginalized populations still remain under- and/or never-engaged. The purpose of this systematic review was to: 1) identify methods or interventions that have been used to engage under- and/or never-engaged populations in health services and 2) identify outcomes that are associated with engaging under- and/or never-engaged populations in health services. A comprehensive search using the Ovid MEDLINE, EMBASE and CINAHL databases was conducted to examine literature between January 2002 and January 2015. Twenty-nine studies met the inclusion criteria. Data was …