Social and Behavioral Sciences Commons^™

A Systems Thinking Framework To Improve Care Of The Terminally Ill: An Australian Case Study, Elizabeth Summerfield

Patient Experience Journal

This paper argues the value of systems thinking to patients, family members and medical practitioners in end-of-life care, particularly as a mechanism for considering when palliative care should be introduced as preferred treatment. It applies a well-established set of tenets in systems thinking retrospectively to a case study of patient care in Australia. This highlights how and where different decisions might have been made, based on a holistic consideration of the patient’s best interests. The case is written from the perspective of a family caregiver. It argues that early, deliberate conversation, framed by systems thinking tenets, can support the call …

Panda: A Case-Study Examining A Successful Audiology And Otology Patient And Public Involvement And Engagement Research Group, Laura Boddy, Richard Allen, Rosalyn Parker, Margaret E. O'Hara, Amy V. Gosling

Patient Experience Journal

There has been increasing involvement of patients and members of the public in research; however, case studies describing patient research groups with hearing loss are non-existent. Such case studies will be valuable, enabling evidence-based dialogue and promoting best practice in the engagement of patients, the public and researchers. This paper aims to discuss this practice. The absence of such dialogue may hinder initial efforts by researchers to realise the potential of Patient and Public Involvement. The objective of this study was to set up and run a patient and public involvement and engagement group in audiology research, use the lessons …

Addressing Social Disconnection Among Frequent Users Of Community Hospital Emergency Departments: A Statewide Implementation Evaluation, A. Rani Elwy, Elisa Koppelman, Victoria Parker, Chris Louis

Patient Experience Journal

We conducted a qualitative exploration and implementation evaluation of a Massachusetts policy initiative, the Community Hospital Acceleration, Revitalization, and Transformation (CHART) investment program, to examine how CHART innovations aimed at reducing unnecessary emergency department (ED) visits also addressed patients’ social disconnection problems according to a social connection framework (structural, functional, quality or multilevel). We performed interviews with 236 stakeholders (hospital managers, CHART providers, staff, and community partners) one-year post CHART implementation. Interviews were analyzed using a directed content analysis approach. Data were then mapped to levels of the social connection framework. Our results support that social disconnection, described as “loneliness” …

Patient Engagement In Action: Timing And Intensity Of Strategies Used To Engage Low Income Depressed Mothers Of Infants And Toddlers, Maureen J. Baker, Beth Perry Black, Linda S. Beeber

Patient Experience Journal

The purpose of this study was to illuminate the process of patient engagement and to determine how components of patient engagement were operationalized in the nurse-patient interpersonal relationship with low income, depressed mothers, a traditionally underserved population. Using a descriptive quantitative design, we examined how components of patient engagement were executed across three phases of the nurse-patient interpersonal relationship. We assessed for differences in engagement strategies used in different phases of the interpersonal relationship and with mothers with varying levels of engagement. Through this study, we observed that patient engagement has several dynamic components varying in intensity and frequency, depending …

Patient Participation Strategies: The Nursing Bedside Handover, Irene Decelie

Patient Experience Journal

Patient participation is an important goal in today’s health care and considered necessary to achieve safe and quality patient care. The purpose of this paper is to discuss the historical and theoretical background surrounding the concept of patient participation in health care and specifically to examine patient participation strategies which have been reported to be of influence when employed during the nurse to nurse and patient to nurse activities encompassed in the bedside handover. The bedside handover is the nursing activity of transferring primary nursing responsibility of care from one nurse to another. Encouraging patients to participate during this process …

Enhancing Patient Involvement In Quality Improvement: How Complaint Managers See Their Roles And Limitations, Nathalie Clavel, Marie-Pascale Pomey

Patient Experience Journal

Patient involvement is a priority for healthcare organizations seeking to improve the quality of care and services. The contribution that complaint handling can make towards quality improvement has remained underexplored, while healthcare organizations are implementing strategies to effectively involve patients in quality improvement. We conducted a qualitative study to understand how complaint managers see their roles and limitations in enhancing patient involvement in quality improvement. A convenience sample of eleven complaint managers was selected from nine Canadian healthcare organizations with various annual volumes of complaints and situated in different settings (urban, rural, and semi-urban). The data were analyzed using a …

How Information Sharing Can Improve Patient And Family Experience In Critical Care: A Focus Group Study, Jayne Garner, Sioban Kelly, Girendra Sadera, Victoria Treadway

Patient Experience Journal

The experience of being in hospital critical care has major impacts upon the patient, their family and carers. This situation is likely to be stressful, fast changing and challenging for those involved. Crucial to this encounter are factors relating to information sharing between the clinical team, the patient, family and carers. Focus groups at a UK hospital site with former patients, their families and carers provides insight into their journey and the factors that influence this. Issues that emerged included the format of information, how and who delivered this, communication transition out of critical care and leaving hospital. While participants …

Exploring Peer Mentoring In Pediatric Transition: Perspectives Of Different Stakeholders About Accompanying Patients In Gastroenterology, Guillaume Dumais-Lévesque, Marie-Pascale Pomey

Patient Experience Journal

The literature identifies several issues in the pediatric transition, such as the lack of coordination between pediatric and adult settings and young patients who are not exercising independence in the self-management of their disease. The objective of this study is to explore the potential for a pediatric transition program in gastroenterology, introducing an accompanying patient program to support the transition. A qualitative case study was conducted, including semi-structured focus groups and individual interviews with each group involved in the pediatric transition between two centres in Quebec. A thematic analysis of the collected data was performed using QDA Miner v5.1. In …

Collecting Child-Patient Feedback: A Systematic Review On The Patient-Reported Outcome Measures For Hospitalized Children, Haneen Ali, Astin Cole, Adam Sienkiewicz, Steffie Rosene, Reagan Shaffer, Robert Thames

Patient Experience Journal

Accurate reporting of patient experiences is a crucial resource for hospitals engaged in patient-and-family-centered care (PFCC). However, studies suggest that most children do not respond to patient satisfaction surveys and are instead represented by their parents or guardians. This study reviewed instruments used to obtain feedback from children about their healthcare experiences for two purposes: 1) To understand the limitations of current tools and 2) To determine if creating a new instrument is necessary. A systematic review was performed on PubMed, Medline, CINAHL, and Web of Science to identify peer-reviewed questionnaires designed to collect children's healthcare experiences. Out of the …

The Impact Of Parental Presence In The Nicu On Hospital Alienation And Other Distress Measures, Katherine D. Taylor, Lindsey Mclaughlin, Devon Kuehn, Justin Campbell, John Kohler Sr, Jason Higginson

Patient Experience Journal

Parental presence in the neonatal intensive care unit (NICU) positively impacts infant development. Few studies have examined the impact of presence on parental distress. Alienation, or lack of trust in the healthcare team, may occur independently from other forms of distress. Increased parental presence was hypothesized to reduce alienation by allowing for more positive in-person interaction with hospital staff. Parents of infants born < 28 weeks or < 1000 grams were prospectively enrolled and completed several surveys measuring distress prior to discharge, including a novel hospital alienation questionnaire. Spearman correlation was used to compare distress measures and visitation rates of 68 mothers and 6 fathers. Alienation was rarely reported and was uncorrelated with other distress measures. Maternal presence was most strongly correlated with anxiety, though this was not statistically significant. Fathers who were more alienated were present in the NICU less and correlation between maternal and paternal alienation was strong. These results were not statistically significant, however. Though statistically significant results were not produced in this research, hospital alienation does appear to be a distinct concept that has been unstudied previously.

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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Patient-Centric Culture And Implications For Patient Engagement During The Covid-19 Pandemic, Umair Majid, Aghna Wasim

Patient Experience Journal

Some consider patient engagement as the “holy grail” of healthcare because of its potential to revolutionize how we view and address health system problems. Multiple efforts around the world have attempted to cultivate a patient-centric culture whereby health services are grounded by the needs and preferences of patients. Recently, health service organizations are engaging patients in a wide array of activities including research and quality improvement. There are many ethical imperatives and economic and social benefits to patient engagement such as higher patient self-esteem and trust, and a more cost-efficient system. However, these benefits have been realized in some contexts …

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 …

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 …

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 …

Teleboard: The Move To A Virtual Family Advisory Board, Sheryl Chadwick, Deejo Miller, Kathryn Taff, Amanda Montalbano

Patient Experience Journal

Restrictions on in-person meetings were going to hamper the ability for the well-established Family Advisory Board (FAB) for our pediatric hospital to continue meeting unless a virtual meeting platform was introduced. The FAB was moved to a virtual platform for the April and May 2020 meetings. Attendance rates from family members and staff were measured and compared to the previous 14 in-person meetings. Contributions during the virtual meetings from each attendee type were recorded to analyze engagement during virtual meetings. There was no statistical difference in average attendance for virtual compared to in-person meetings, 75% versus 64.3% for family members …

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 …

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 …

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 …