Medicine and Health Sciences Commons^™

Medicine And Kindness, A Glorious Concurrence?, Araya Gautam

Patient Experience Journal

This article unfolds the journey of a 28-year-old junior doctor entangled in the throes of a pernicious anemia diagnosis during her travels abroad, a scenario exacerbated by the grip of a COVID-19 lockdown. Adrift without medical insurance and distant from her family, she found herself under the care of a compassionate on-call resident, emphasizing the crucial role of kindness and compassion in her predicament. Her treatment regimen encompassed a series of CBC tests meticulously tracking cobalamin and ferritin levels, complemented by extensive examinations for iron deficiency and a regimen of vital vitamin B12 injections, all carried out under vigilant scrutiny …

Leveraging Telehealth Supportive Oncology Services To Combat Covid-19 Isolation In Breast Cancer Patients: A Cancer Center’S Perspective, Jake R. Erickson, Maranda K. Pahlkotter, Paul D. Thielking, Jane M. Porretta, Regina Rosenthal, Cindy B. Matsen, Kirstyn E. Brownson

Patient Experience Journal

During the COVID-19 pandemic, breast cancer patient in-person visits were converted to telehealth visits. Given our concerns about increased isolation amongst breast cancer patients during the pandemic, and the deleterious effects of such isolation on patient outcomes, we investigated utilization rates of psycho-social services amongst newly diagnosed breast cancer patients at our institution. We explored visit platforms (telehealth versus in-person) and time points prior to and encompassing the early pandemic. Despite decreased new breast cancer visits, there was a greater than 2-fold increase in supportive oncology service encounters in breast cancer patients during COVID-19 suggesting increased need for psycho-oncology resources. …

Part Of The Team: Effecting Change And Sharing Power In Healthcare Settings, Jessica Stanier, Rachel Purtell, Dave Thomas, William Murray

Patient Experience Journal

In 2019, we, as a group of patients and researchers, were invited to rethink how the executive board received and responded to patient stories at a specific NHS hospital trust in the UK. Through an iterative series of meetings, we were able to co-identify common concerns and together develop a distinctive narrative framework for effecting change by sharing patient experiences. This narrative framework is designed to help patients position themselves as ‘part of their healthcare team,’ emphasising roles and responsibilities between patients and health practitioners to compare ideals with reality in patient experiences. While the project was promising, several factors …

Strengthening Patient-Family Engagement Amidst A Pandemic: Lessons Learned And Paths Forward, Kyle J. Rehder, Shannon Haney, Jan Freeman, Aaron West

Patient Experience Journal

The COVID-19 pandemic was highly disruptive to healthcare and negatively affected healthcare worker and patient experience on multiple levels. Patient Family Advisors serve an important role in partnering with health systems to improve patient experience, yet the work of many volunteer programs were interrupted by the onset of the pandemic, at a time when integrating patient voice into care delivery was sorely needed. This case study presents one health system’s experience adapting a system-wide Patient Family Advisory program in the setting of the COVID-19 pandemic, including the transition to a virtual format and increased flexibility in how Patient Family Advisors …

Living With Covid-19 In The Community During The First Wave Of The Pandemic: Lessons From Patients For Healthcare Providers And Policy Makers, Linda Rozmovits, Michelle Marcinow, Ilja Ormel, Terence Tang, Elizabeth Mansfield, Kerry Kuluski, Seema Marwaha, Susan Law Dr

Patient Experience Journal

This qualitative descriptive study explores patients’ experiences of living with COVID-19, in the community, during the early stages of the pandemic. Between October 2020 and April 2021, fifteen semi-structured, video-recorded interviews were conducted, via Zoom, with participants in five Canadian provinces. Participants self-identified as having had a confirmed or suspected case of COVID-19. The constant comparative method was used to produce a thematic analysis of findings. Key findings include 1) PCR tests were not widely available in Canada, during the first wave, so many participants lacked a confirmed diagnosis and, subsequently, encountered challenges accessing specialist medical care; 2) Rapidly changing …

Non-Covid-19 Hospitalizations: Patients’ Experiences During The Covid-19 Pandemic, Julia Patrick

Patient Experience Journal

The purpose of this Qualitative Descriptive study was to describe the experience of hospitalized adults during the pandemic who did not have COVID-19. Semi-structured interviews were conducted with 20 English-speaking adults who were hospitalized on a medical or surgical floor after April 1, 2020 and were negative for COVID-19 throughout their entire hospital stay. The interview questions focused on the overall hospital experience, the nurse’s role in their experience, comfort needs, and the experience of having comfort needs met during the hospitalization. Conventional content analysis of the transcribed transcripts revealed five main themes related to the hospital experience: I don’t …

Tranquility Rooms For Team Member Well-Being: Implementation During Covid-19 Pandemic, Julie A. Kennedy Oehlert, Christina M. Bowen, Holly Wei, Wendy Leutgens

Patient Experience Journal

In 2020, the COVID-19 global pandemic changed the landscape of healthcare delivery and with it the need to better address team member well-being. Aside from patients and their families, healthcare professionals were among the most affected and at high risk for suffering psychological distress, including increased stress, depression, anxiety, substance use, and post-traumatic stress disorder. Prior to COVID-19, healthcare workers were already experiencing a high rate of job burnout, depression, and suicide. The pandemic brought in sharp focus the essential and urgent need for healthcare facilities to acknowledge the importance of team member well-being and the provision of spaces such …

Caring For The Caregiver During Covid-19 Suspended Visitation, Melissa D. Rouse, Lorie K. Shoemaker, Priscilla Kyle, Chris Tenold, Whitney Anthony, Jordan White

Patient Experience Journal

During the 4th surge of COVID-19, August to November 2021, visitation was suspended in a hospital system in North Georgia. The Compassionate Connections Call Center (CCCC) was created to alleviate staff stress and to manage calls and communication. The goal of the initiative was to reduce interruptions to patient care caused by the increased number of calls to the clinical units by patients, families, loved ones and personal caregivers. The CCCC managed all incoming calls and communicated with the patient’s primary nurse through a coordinated process which limited interruptions. By caring for the caregiver, the aim was to improve the …

Patient And Provider Experiences With Virtual Care During The Covid-19 Pandemic: A Mixed Methods Study, Mars Zhao, Hisham Elshoni, Jennifer O'Brien, Erin Barbour-Tuck, Mary Ellen Walker, Heather Dyck, Andrea Vasquez, Eric Sy, Angela Baerwald, Clara Michaels, Rejina Kamrul, Olivia Reis, Brenda Schuster, Barb Beaurivage, Adam Clay, Mark Lees, Jonathan Gamble

Patient Experience Journal

The COVID-19 pandemic prompted the rapid uptake of Virtual Care (VC). Positive patient outcomes with VC are previously reported but little is known about the experiences of patients and providers using VC during the pandemic. We aimed to describe patient and primary care provider experiences, satisfaction, perceptions, and attitudes to VC during the COVID-19 pandemic that might explain adoption of VC across the continuum of care and inform sustained uptake. We conducted a sequential explanatory mixed methods study using online surveys and virtual interviews with a convenience sample of primary care providers and patients in a Canadian province (July – …

Understanding Patient Experiences Before And During The Covid-19 Pandemic: A Quasi-Experimental Comparison Of In-Person And Virtual Cancer Care, Linda Watson, Claire Link, Siwei Qi, Eclair Photitai, Lindsi Chmielewski, Diane Fode, Andrea Deiure

Patient Experience Journal

The COVID-19 pandemic prompted the immediate widespread implementation of virtual care appointments in Cancer Care Alberta (CCA). This study aimed to compare patient experiences and satisfaction with in-person care provided prior to the pandemic and virtual care provided after the COVID-19 outbreak. Surveys were conducted to compare patient satisfaction, using the Your Voice Matters (YVM) experience survey, between patients in the pre-pandemic in-person (baseline) and post-outbreak (virtual) cohorts. Generalized Linear Models (GLMs) with an ordinal logistic link were used, adjusting for self-reported health status and other covariates, to investigate the association between cohort type and patient satisfaction. Despite having higher …

An Exploration Of Psychological Trauma And Positive Adaptation In Adults With Congenital Heart Disease During The Covid-19 Pandemic, Liza Morton Dr, Calum Calderwood, Nicola Cogan, Claire Murphy, Evan Nix, Jacek Kolacz Dr

Patient Experience Journal

The growing population of adults with congenital heart disease (CHD) often have lifelong experience of dealing with potentially traumatic health crises and medical uncertainty whilst facing increased vulnerability to post-traumatic stress disorder (PTSD). The COVID-19 pandemic presents additional challenges for this population including increased risk of health complications, shielding and strict social distancing, changes to medical care provision and social stigma. Despite such challenges, adults with CHD have the potential to also experience positive changes, yet little is known as to what helps cultivate positive adaptation and post-traumatic growth (PTG) within this context. The current study comprised a cross-sectional, anonymous, …

Adapting And Responding To A Pandemic: Patient And Family Advisory Councils In Children's Hospitals During Covid-19, Pam Dardess, Deborah L. Dokken, Ndidi I. Unaka, Jesse Hsu, Mindy Hoang, Andrew F. Beck, Beverley H. Johnson

Patient Experience Journal

This mixed-methods study investigated the effects of the COVID-19 pandemic on Patient and Family Advisory Councils (PFACs) within children’s hospitals in the United States. Specifically, the study sought to understand how PFACs adapted operations as a result of the COVID-19 pandemic, how patient and family advisors (PFAs) were engaged in the response to COVID-19, and the intersection of the COVID-19 pandemic with PFAC diversity, equity, and inclusion. The study consisted of a survey distributed to 228 children’s hospitals, with a 73% response rate, and in-depth interviews with selected survey respondents (n=12). While COVID-19 temporarily disrupted PFAC operations and forced rapid …

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 …

Community: The True Driver Of Excellence In Human Experience, Jason A. Wolf

Patient Experience Journal

The idea that we are a community first, a community of people from a breadth of backgrounds and experiences, from all corners of our world, has been the foundation on which our work has been built, our efforts motivated, our research driven and our hope inspired. It is a tapestry of possibility, grounded in evidence and brought to life in practice that has made the journey to our 9^th volume so enriching. A community is fostered in realizations of people who want to be part of something together – an idea, a hope, a purpose or possibility – and …

The “Wreckage” Left By The Covid-19 Passage: Thoughts Of A Palliative Care Nurse, Angela Simões

Patient Experience Journal

Today, according to Johns Hopkins University, the overall number of global COVID-19 cases has exceeded 244 million with more than four million deaths. Humankind is currently facing an unprecedented global crisis. The impact of this crisis on the healthcare system is potentially far greater than we imagine. This narrative presents a series of stories lived by a palliative care nurse in COVID's time to show how the pandemic itself is a form of inequity and health disparities on the human experience. In my previous narrative, written in April 2020 and published in the Patient Experience Journal Vol. 7, Issue 2, …

How To Address Fear: A Patient’S Perspective Of Seeking Care During Covid-19, Rosie Bartel, Sydney Hoel, Nasia Safdar, Mary Jo Knobloch

Patient Experience Journal

This article is a narrative of one patient’s experience during COVID-19. As a non-COVID patient, she shares her personal fears, the fears of others in her family and the fears of the healthcare professionals. These fears have made navigating the healthcare systems stressful for patients but also caused patients to avoid them completely. In some cases, this avoidance led to delayed diagnosis, missed diagnosis and death. When healthcare providers guide patients through the process of seeking in-person healthcare, the outcomes were more positive for everyone involved but especially for the patients and their care partners. The patient’s voice is needed …

The Experience, Satisfaction, And Emergency Department Utilization Of Pediatric Patients With Sickle Cell Disease During The Covid-19 Pandemic, Alexandra E. Kirsch, Nataly Apollonsky

Patient Experience Journal

The COVID-19 pandemic has influenced how patients utilize healthcare. This study examines the utilization, experience, and satisfaction of patients with Sickle Cell Disease (SCD) in the pediatric Emergency Department (ED) during the COVID-19 pandemic compared to the care they had received before the pandemic. The authors surveyed fifty-eight participants ages 14 months to 20 years who presented to the ED for a complaint related to their SCD during the COVID-19 pandemic. The study analyzed five variables: race, SCD severity, hemoglobin (Hgb) genotype, who completed the questionnaire (patient versus parent/guardian), and whether the ED visit resulted in an admission to the …

Moving From Talk To Action: A Commitment To Ensuring Equity Must Ground Our Efforts To Transform The Human Experience, Jason A. Wolf Phd

Patient Experience Journal

When we first introduced the call for submissions for this special issue last August, we were still churning in the first wave of the COVID pandemic. Just three to four months from the start of an unending rash of unexpected and harsh realities that we were faced with in healthcare and in society at large, we too found that the moment was revealing all the weaknesses and wounds that had existed in the foundations of the healthcare system from well before the pandemic hit. Our own research at The Beryl Institute in 2020 reinforced a quiet reality: that people do …

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 …

An Evaluation Of The Effectiveness Of A Unique Patient Experience Response Program That Provided Virtual, Visual And Emotional Connectivity To Patients And Families During The Covid-19 Crisis, Diane Burshtein, Donna Powers

Patient Experience Journal

In April 2020, the New York State Department of Health issued guidelines regarding suspension of hospital visitation due to coronavirus disease 2019 to protect staff and patients and prevent spread of the virus. Recognizing that patients would need extraordinary emotional support as they faced this frightening journey, two hospitals from a health system in the national epicenter provided avenues to bridge gaps in connectedness and communication. Our program provided virtual, visual and emotional connectivity by utilizing repurposed staff to serve as patient experience ambassadors. This program reduced the burden on clinical staff while preventing furlough. A descriptive correlational study …

The Influence Of Covid-19 Visitation Restrictions On Patient Experience And Safety Outcomes: A Critical Role For Subjective Advocates, Geoffrey A. Silvera, Jason A. Wolf Phd, Anthony Stanowski, Quint Studer

Patient Experience Journal

With the emergence of the coronavirus (COVID-19) pandemic in the United States in early 2020, hospitals across the country made the difficult decision to alter visitation policies, by either limiting visitations or restricting visitations altogether by closing access to family, friends and care partners in an effort to reduce further spread of the virus. While there is foundational research on the impact of family and care partner presence on the experience of patients and patient safety outcomes, the actions driven by the pandemic allowed for a real-time comparison of the impact of family or care partner presence or lack thereof. …

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 …

A Student's Lesson In Healthcare Disparities, Daniel Oluwatimilehin Macaulay, Christine Khandelwal, Leah Rosen

Patient Experience Journal

This narrative was born out of a desire to examine the effects of healthcare disparities among minority populations. As a medical student, I had the opportunity to spend a 4-week rotation working with physicians specializing in palliative care during what is arguably the most challenging public health crisis in over a century. This provided a unique perspective that allowed the observation of the intersection of healthcare systems with underserved and vulnerable minority populations, and palliative medicine. It also allowed us to observe the negative consequences it has had, particularly during a hard-hitting global pandemic. The paper gives a brief introduction …

Solitude And Fear During The Great Coronavirus War, Chiara Catania, Ester Del Signore, Letizia Gianoncelli

Patient Experience Journal

When you get ill, the first thing that comes to your mind is, “Will I make it? Will I survive?". COVID19 has a major impact on mental health. A sadness that inundates us like a river in flood and which we cannot hold back. But the thing that torments is the solitude. Those who struggle towards recovery do it alone, and those who do not make it die alone. An emblematic experience of a sense of loneliness, depression and death during illness is deeply described. We tell how the love of family and friends can help to recover from the …

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 …

Cards From The Community: Engagement Of The Local Community To Enhance Patient And Staff Experience During The Covid-19 Pandemic, Brittany Branson

Patient Experience Journal

During the COVID-19 pandemic, in accordance with recommendations from the Centers for Disease Control and Prevention (CDC.gov), strict visitation restrictions were implemented across the six hospital Yale New Haven Health System (YNHHS) in an effort to protect patients, visitors and staff. In addition, to the extent that it is possible, YNHHS staff have been encouraged to work remotely. While these measures achieve the goal of reducing the number of people within the hospitals and enable successful social distancing, they also may contribute to social isolation for both patients and staff. A program called “Cards from the Community” was developed to …

Flattening The Curve Of Distress: A Public-Facing Webinar For Psychoeducation During Covid-19, Grant Smith, Stephanie Harman, Keri Brenner

Patient Experience Journal

This case report describes the development, implementation and evaluation of a public-facing webinar that provided psychoeducation addressing the emotional distress that has accompanied the coronavirus pandemic. Using a webinar was an effective strategy for reaching a large, public audience and making content from expert clinicians accessible. Participants were likely to recommend the webinar to friends or family. Participants appreciated that the webinar acknowledged the presence of distressing emotions and provided practical advice for reducing the negative psychological sequelae of the coronavirus pandemic. Areas for improvement included addressing technical issues and incorporating additional information into the webinar.

Experience Framework

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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 …