Medicine and Health 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 …

Perceptions Of Care & Patient-Provider Communication By Varying Identity Groups In A Collegiate Health Clinic, Yewande O. Addie, Tatiana Maser, Cecilia Luna, Casey Rayfield, Kelli R. Agrawal

Patient Experience Journal

LGBTQ patients experience discrimination and poor access to quality health care, but there is little inquiry on the experiences of LGBTQ patients in student health clinic. The purpose of this study was to examine the quality of patient-provider communication (PPC) among sexual and gender minority patients, especially those who have intersecting minority identities, in a student healthcare setting. An online survey measured PPC using the Communication Assessment Tool (CAT) and contextual questions regarding identity and perceptions of judgment. Analysis tested intersectional variance in both. A convenience and snowball sample of 102 respondents, 18+, that utilized health services at a public …

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” …

Management Of Frequent Ed Users By Community Paramedics Improves Patient Experiences And Reduces Ems Utilization, Oluwakemi Aiyedun Adio, Laura Ikuma, Sonja Wiley

Patient Experience Journal

This study examined a suburban emergency medical system (EMS)-led community paramedicine (CP) program in terms of adherence to protocol, patient-paramedic interactions, patient experience, and cost. Participants (n=57) are frequent emergency department (ED) users (≥ 4 ED visits/year), with a mean age of 59.8±17.6 years and have multiple chronic conditions. Of these, 36 completed a modified Clinician and Group Consumer Assessment of Healthcare Providers and Systems (CG-CAHPS) survey at 3- and 6-months following program enrollment. The main outcome measures were adherence to intake goals; types, modes, and frequencies of CP interventions; CG-CAHPS patient experience scores; and cost savings. Cost savings compared …

Patient Experience In Outpatient Clinics: Does Appointment Time Impact Satisfaction?, Shikha Shah Modi, Jennifer B. Costigan, Mark Lemak, Sue Feldman

Patient Experience Journal

The objective of this study is to understand patient experience by appointment time by analyzing the Consumer Assessment of Hospital Provider and Systems (CAHPS) scores at a granular level across pre-determined time periods (AM and PM). This study utilized quantitative and qualitative methods. A deidentified secondary data set from the University of Alabama at Birmingham’s Press Ganey website was used to analyze the difference in CAHPS scores across AM and PM time periods. Unstructured survey responses were analyzed as a way to further enrich the quantitative findings. The data sample consisted of 821 responses from a dermatology clinic for the …

Patients’ Experience In Hong Kong Hospitals: A Comparison Between South Asian And Chinese People, Nimisha Vandan, Janet Yuen-Ha Wong Dr., Paul Siu-Fai Yip Chair Professor, Daniel Yee-Tak Fong Dr.

Patient Experience Journal

Patient experience in hospital is positively associated with both self-rated and objectively measured health outcomes. In many countries ethnic minority patients have more negative experience and bear a disproportionate burden of disease than their majority counterparts. However, hospital experience of ethnic minority patients in Asia is still unexplored. We aimed to explore the hospital experience of South Asian ethnic minority and compare that with local Chinese patients’ experience in Hong Kong. A cross-sectional study sample comprised of 783 participants (388 South Asian and 395 Chinese). Picker Patient Experience-15 (PPE-15) questionnaire was used for data collection. Simple and multiple regressions were …

Responsiveness Of Primary Health Care Services In Nigeria: The Patients’ Perspective, Daprim S. Ogaji, Chinedu B. Egu, Michael Nwakor-Osaji, Amala C. Smart, Emeka F. Anyiam, Faith C. Diorgu

Patient Experience Journal

Health system responsiveness reflects the extent national health systems meet the legitimate expectations of patients. This study assessed the responsiveness of primary health care services in Nigeria from the clients’ perspective. A cross-sectional survey of 379 participants were randomly selected from 7 centers from a sample frame of 20 primary healthcare centers. Descriptive results were presented in frequencies and percentages. The associations between the importance and performance ranking were examined using the Spearman’s ranked correlation coefficient. Multivariate logistic regression was used to identify predictors of responsiveness with p-values ≤ 0.05 considered statistically significant. There were equal proportion of respondents aged≥30 …

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 …

Living With Cardiovascular Disease (Cvd): Exploring The Biggest Challenges For People Affected By Cvd In The Uk, And Their Use (Or Not) Of Online Resources, Sarah-Ann Burger, Alan J. Poots, Anna Perris, Helen Crump, Helen Thorne, Sally Hughes, Jacob West

Patient Experience Journal

As death rates decrease, people affected by cardiovascular disease (CVD) continue to live with these diseases and the associated challenges, long-term. We aimed to identify the biggest challenges for people affected by CVD in the UK and explore the sources of support and information used to help manage conditions, to inform future service provision. An online questionnaire was sent and advertised to people over 16 years old in the UK self-identifying as affected by CVD (living with CVD, had risk factors, or a carer). There were 13,885 responses. The top five challenges were: feeling down, sad, or depressed; making changes …

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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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 …

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 …

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)

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• 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 …