Social and Behavioral Sciences Commons^™

In Their Own Words: How Opioids Have Impacted The Lives Of “Everyday” People Living In Appalachia, Patricia Nola Eugene Roberson, Gina Cortez, Laura H. Trull, Katherine Allison Lenger

Journal of Appalachian Health

Introduction: The opioid epidemic is ravaging people, families, and communities in Appalachia. However, limited research has examined how “everyday” people (e.g., not chronic pain patients, not medical professionals) living in these communities how opioids have impacted their lives.

Objective: Identify the perception of the opioid epidemic on individuals, families, and communities from people living in region most impacted regions.

Methods: Patients were recruited at Remote Area Medical clinics throughout Central and Southern Appalachia to complete interviews online (N = 169) or over the phone (N = 26), including one open-ended question about how opioids have impacted their lives.

Results: Using …

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 …

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 …

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 …

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 …

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 …

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 …

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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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 …

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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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 …

Cultural Food Habits As A Social Factor Of Health Among Immigrants In New Haven, Connecticut: A Focused Ethnographic Study, Luke Anderson

University Scholar Projects

Diet-related health disparities are well documented in immigrant populations. This study aims to help better inform nutrition interventions. It did so by working with migrant members of the New Haven community to explore their perceptions of the nutrition of the food they eat and relate it to how this food is grounded in their cultural identity and social belonging.

The Role Of Culture In Engaging The Senior Population In Omaha, Ne, Jamie Bish

Theses/Capstones/Creative Projects

In recent years, the senior care industry has become the focus of many public health initiatives as we have come to better understand the significance of our aging population (Olivari et al., 2020). Between the years 2010 and 2050, the population of the United States over 65 years is expected to more than double, from 40.5 to 89 million (Dall et al., 2013). While this data provides a national outlook, further research is needed to determine local impacts. This project centers on developing a better understanding of the demographics of seniors in the Omaha-Council Bluffs Metropolitan Statistical Area and how …

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 …

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

Patient Experience Journal

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

Patient Feedback: Listening And Responding To Patient Voices, Simon J. Radmore, Kathy Eljiz, David Greenfield

Patient Experience Journal

The study aim was to identify key strategies to improve organisational systems and care experiences, to confront the challenges of achieving effective patient feedback throughout a large healthcare organisation. A mixed methods exploratory approach was used. Purposive and snowball sampling, semi-structured interviews with key stakeholders, and document analysis of existing feedback processes was utilised. The setting was a large metropolitan Local Health District in Sydney, Australia. Data was examined using thematic and content analysis. Participants identified no single feedback process was able to adequately gather all feedback necessary to reflect the patient experience. Patient feedback processes that are most useful: …

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

Patient Experience Journal

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

What Do We Know About The Nexus Between Culture, Age, Gender And Health Literacy? Implications For Improving The Health And Well-Being Of Young Indigenous Males, Anthony Merlino, James A. Smith, Mick Adams, Jason Bonson, Richard Osborne, Barry Judd, Murray Drummond, David Aanundsen, Jesse Fleay, Benjamin Christie

Research outputs 2014 to 2021

Health literacy, although diversely defined, refers to the abilities, relationships and external environments required for people to successfully promote health. Existing research suggests that health literacy is related to health inequities, including individual and community capacity to navigate health. A diverse range of factors shape health literacy abilities and environments, especially culture, gender and age. However, the nexus between these variables and their cumulative impact on health literacy development remains largely unexplored. Commentary that explores these dynamics among young Indigenous males is particularly scant. In turn, strategies to bridge health equity gaps have been obscured. This article brings together disparate …