Medicine and Health Sciences Commons^™

Before It Is Over: A Family’S Experience With End-Of-Life Care During Covid-Related Restrictive Visitation Policies, Andjela H. Kaur

Patient Experience Journal

It is not uncommon in the American medical community that a personal narrative sparks a conversation about a controversial topic. In 1988 the Journal of American Medical Association published a narrative by a medical doctor which provoked a debate on euthanasia within the readership of the journal and the greater public. The testimony that I am presenting aims to invite a public dialogue on the harmful effects of restrictive visitation policies brought on by the COVID -19 pandemic. The story of my family’s experience during the end-of-life care for my mother, a COVID patient, illustrates how urgent is the need …

Surveying Pediatric Caregivers’ Readiness For Dyad Isolation In The Hospital During Covid-19, Shanqing Yin, Mei Zi Quek, Celestine Mun Ting Yeo, Sylvia Mun, Ronghui Li, Derrick Chan

Patient Experience Journal

The onset of any emerging outbreak is stressful for everyone. Singapore was one of many countries affected early by COVID-19. In response, many precautionary measures were quickly initiated, including the isolation of suspected COVID-19 pediatric cases, and their caregivers were isolated together with their hospitalized children as a result. Caregivers play an important role in facilitating their child’s health in the hospital. Rooming in with their children during hospitalization promotes the benefits of parental presence and reduces separation effects. However, sudden admission with strict movement restrictions poses stress to these caregivers too. This study ran a 3-part paper-based survey to …

No Visitors Allowed: How Health Systems Can Better Engage Patients’ Families During A Pandemic, Jennifer Schlimgen, Amy Frye

Patient Experience Journal

The ravages of COVID -19 and the no visitor policies that accompany it have forged a tectonic shift in the patient and family experience. This hit home for me with a recent family member health event and hospitalization, leading me to think “we HAVE to do better!” Why should hospitals and health systems care about family involvement during COVID-19?

Experience Framework

This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework).

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Cancer Patient Perspectives During The Covid-19 Pandemic: A Thematic Analysis Of Cancer Blog Posts, Matthew A. Hintermayer, Mark Sorin, Joan M. Romero, Sarah M. Maritan, Owen J. Chen, Surabhi Rawal

Patient Experience Journal

The content of online cancer patient blogs has previously been analyzed to inform physicians about the cancer experience and patient concerns. The coronavirus disease 2019 (COVID-19) pandemic has greatly affected cancer patients due to their vulnerable health status, as well as changes in cancer testing and treatment. We sought to qualitatively describe the concerns and experiences expressed online by cancer patients, survivors, and family members in relation to COVID-19. 152 blog posts written by cancer patients, survivors, or family members, were selected using combined Boolean searches and snowball sampling. Reviewers extracted subthemes from blog posts using line-by-line text analysis until …

Moving Forward To The Future Of Healthcare, Jason A. Wolf

Patient Experience Journal

To say this moment in our shared global history feels shaky or uncertain for so many is not a statement of despair. Rather, it is acknowledging a reality through which we can best act and hopefully step through. As of the time this editorial will publish, well over 50 million cases of COVID-19 will have been reported. This is a reality all of humanity is sharing together; it is a challenge that healthcare is being called on to tackle. The work of people around the world to care for the sick, to find the right treatments and vaccines and the …

Micro-Volunteering At Scale Can Help Health Systems Respond To Emergencies, Such As The Covid-19 Pandemic, Neil Churchill Obe

Patient Experience Journal

One of the unprecedented challenges of the Covid-19 pandemic has been to support millions of clinically high-risk individuals who were advised to self-isolate for long periods to reduce the likelihood of infection. The NHS in England issued a mass call for volunteers in March 2020 to help support people who were shielding or vulnerable for other reasons during the lockdown. Three quarters of a million people came forward to aid the health at home experience for these vulnerable individuals by providing friendly telephone calls, help with shopping or collection of medicines or transport to essential hospital appointments. Hospitals also used …

My Six-Word Story: Power To Reconnect And Connect, Alexie Puran

Patient Experience Journal

The COVID-19 global pandemic is a threat to the well-being of our healthcare professionals. Recent studies on the mental health effects of healthcare professionals from China and Italy have revealed higher levels of depression, anxiety and psychological distress. As a Pediatric Emergency Medicine physician working on the frontline and a H3 (Helping Healers Heal) Peer Champion, I sought to support my staff’s well-being and emotional resilience. My Six-Word Story, a simple and meaningful activity was designed to support the psycho-social well-being of those on the frontline providing care. This new project was implemented in the Pediatric Emergency Department at NYC …

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 …

Caring For Our Caregivers In Body, Mind And Spirit During The Covid-19 Pandemic, Rick Evans, Philip J. Wilner, Kristen Spillane

Patient Experience Journal

New York City became the epicenter of the coronavirus pandemic in March 2020. The surge of critically ill patients combined with widespread social distancing measures created extraordinary challenges for healthcare workers. Many frontline workers experienced significant physical, psychological, and emotional distress. They faced demanding patient care responsibilities while managing personal obligations and health concerns.

During the COVID-19 pandemic, it was imperative that NewYork-Presbyterian care for its workforce’s physical, psychological and emotional needs, not only because of our commitment to our colleagues as people, but also because of our obligation to continue to deliver high quality care and experience to the …

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 …

Positive Patient Experience In Eye Care During Covid-19: A Case From Eye Hospital Sistina Oftalmologija, Vesna Cado

Patient Experience Journal

COVID-19 was a wake-up call, changing the world we know and our experiences in every possible way. Healthcare systems, as the most exposed and stressed in this situation, were called to urgently respond to the new reality. Physical distancing and stay-at-home directives have flattened the curve and decreased the risk of viral transmission but also decreased the clinical volume in eye care medical practice. Hospitals must work hard to find a balance in responding to the pandemic while providing quality care and positive patient experiences. Previous research on crises has been mostly focused on implementing crisis management strategies to handle …

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)

• Access other PXJ articles related to this lens.
• Access other resources related to this lens.

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 …

Focusing On Positivity During The Covid-19 Crisis: A New York Health System Strategy, Sven Gierlinger, Agnes Barden

Patient Experience Journal

In the midst of the COVID-19 pandemic, spreading positivity has become a core mission of Northwell Health, the largest integrated health system in New York. As a state and community health system, we are forever changed, but our need for compassion, humanism, and connection has never wavered. Creating innovative ways to bring humanity to the forefront, hope and optimism echo across the organization as initiatives, forums, and acts of gratitude have ensued.

Experience Framework

This article is associated with the Culture & Leadership lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework)

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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 …

Treading Water: Coping With Uncertainty During A Novel Pandemic, Sachin Patel

Patient Experience Journal

The abruptness with which the COVID-19 pandemic has changed the delivery of healthcare will have a lasting effect on patients and families of intensive care unit survivors. Using the best science and epidemiology healthcare systems developed protocols and policies to implement the highest level of care but mitigate disease spread. Out of these initiatives the “no visitor” policy was born. The impact of COVID-19 causing florid respiratory failure immediately derailed the lives of a happily retired couple. While on mechanical ventilation for sixteen days, Betty was unable to connect with her husband of over 40 years. In that time, the …

Getting Comfortable With Being Uncomfortable: A Conversation With Marsha Sinanan-Vasishta, Jason A. Wolf

Patient Experience Journal

We find ourselves managing two critical moments and a powerful confluence of events, one a crisis in health. We are still facing the COVID crisis, and we are trying very hard to rely on evidence and truth that will lead us forward in addressing that in the best way possible. We are also in a crisis of humanity, one that has been simmering beneath the surface for years, the issue of systemic racism and disparities in healthcare, further highlighted by the COVID crisis. This article shares the conversation I had with Marsha Sinanan-Vasishta, MSN, MBA, RN, NEA-BC, CPXP, Deputy Chief …

Leadership Matters: A Conversation With Dr. James Hildreth, Jason A. Wolf

Patient Experience Journal

I was extremely honored at this moment in the midst of our current health crisis to have a conversation with Dr. James Hildreth, president and chief executive officer of Meharry Medical College. The focus and commitment expressed by Dr. Hildreth reflects the very mission statement of Meharry Medical College itself, to advance health equity through innovative research, transformative education, exceptional and compassionate health services and policy-influencing thought leadership. As equally important is the alignment of Meharry’s purpose with our very own at the Institute, as Meharry’s mission continues to empower diverse populations to improve the well-being of humankind. Dr. Hildreth …

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 …