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The Beryl Institute

Patient experience

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Transforming The American Experience Of Death: What Dreams May Come?, Melinda Xu, Geoffrey A. Silvera Phd, Mha, Lyle Walton, Jane Banaszak-Holl Nov 2023

Transforming The American Experience Of Death: What Dreams May Come?, Melinda Xu, Geoffrey A. Silvera Phd, Mha, Lyle Walton, Jane Banaszak-Holl

Patient Experience Journal

There is no means to evaluate the death experience in the US healthcare system. Other countries have established population-wide measures to evaluate and improve the dying experience for patients and their families. With an increasing population of advanced-age persons, changes in sites of death, and a continually fractured healthcare delivery system, there is a need to establish a universal assessment of the quality of death in the US. In this commentary, we outline the need for such an assessment and build off of previous literature on the various existing assessments of the quality of death that have typically been reserved …


Patient-Centered Care Frameworks, Models And Approaches: An Environmental Scan, Aghna Wasim, Maria Sajan, Umair Majid Aug 2023

Patient-Centered Care Frameworks, Models And Approaches: An Environmental Scan, Aghna Wasim, Maria Sajan, Umair Majid

Patient Experience Journal

Although the definition of patient-centered care (PCC) remains unclear, researchers and healthcare professionals describe the concept as treating the patient as a unique human being with consideration for their physical and psychosocial needs and emphasize the importance of shared-decision making between patients and healthcare professionals. However, discussion around the connection and overlap between PCC and patient and family engagement (PE) has been limited. Some authors describe PE as an operationalization of PCC, while others consider PE a type of PCC. An enhanced understanding of PCC might allow for improvements in implementing PE across healthcare systems. Insight into the operationalization of …


A Concept Analysis Of The Patient Experience, Tanja Avlijas Rn, Mscn, Janet E. Squires Rn, Phd, Michelle Lalonde Rn, Phd, Chantal Backman Rn, Phd Apr 2023

A Concept Analysis Of The Patient Experience, Tanja Avlijas Rn, Mscn, Janet E. Squires Rn, Phd, Michelle Lalonde Rn, Phd, Chantal Backman Rn, Phd

Patient Experience Journal

Patient experience, an essential indicator of quality patient care, is of increasing importance to hospitals that want to improve and maintain strong patient experience metrics to remain competitive in the business of healthcare. The aim of this study was to clarify the concept of the patient experience by identifying its existing definitions, methods of measurement, and underlying themes and attributes, to differentiate it from similar concepts and propose an operational and theoretical definition to guide valid and reliable development of future assessment tools. Walker and Avant’s eight-step methodology served as the framework for this concept analysis. A literature search, using …


Technology About Me Without Me: An Examination Of The Relationship Between Patient-Facing Technology And Patient Experience, Geoffrey A. Silvera Phd, Mha, Courtney N. Haun Phd, Mph Nov 2022

Technology About Me Without Me: An Examination Of The Relationship Between Patient-Facing Technology And Patient Experience, Geoffrey A. Silvera Phd, Mha, Courtney N. Haun Phd, Mph

Patient Experience Journal

To appreciate the role of electronic health records (EHRs) in achieving the goals of patient-centered care, scholars have focused primarily on the influence of EHR capabilities on clinical providers’ behaviors. The objective of this study is to examine the degree to which patient-facing technology (P-Tech) in U.S. hospital EHRs are associated with patient evaluations of their care experience. A cross-sectional OLS regression is executed to examine the relationship between P-Tech and patient experience on a sample of U.S. hospitals (n=1,168) compiled via data from CMS, the American Hospital Association’s (AHA) Annual Survey (2014), and the AHA Health …


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 Apr 2022

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 …


Consumer Experience Of Mental Health Services During The Covid-19 Pandemic: Evidence From An Australian Mental Health System, Sarah Kelshaw, Jason Boyd, Irene Gallagher, Grant Sara Apr 2022

Consumer Experience Of Mental Health Services During The Covid-19 Pandemic: Evidence From An Australian Mental Health System, Sarah Kelshaw, Jason Boyd, Irene Gallagher, Grant Sara

Patient Experience Journal

COVID-19 has increased the need for mental health care but disrupted its delivery. We examined impacts of the first year of the COVID-19 pandemic on consumer experience of NSW hospital and community mental health services, compared to their pre-COVID baseline. We also examined whether increased telehealth use was associated with changes in the quantity or experience of community mental health care. Data were 73,488 Your Experience of Service (YES) surveys from state mental health services in New South Wales (NSW), Australia, grouped into three periods: pre-COVID (January 2018 to March 2020), early-COVID (April to June 2020) and stable-COVID (July to …


Family’S Sufferings From Asymptomatic Covid: Clinicians’ Perspective, Neha Joshi Dr, Jitender Nagpal Dr, Anand Sinha Dr Apr 2022

Family’S Sufferings From Asymptomatic Covid: Clinicians’ Perspective, Neha Joshi Dr, Jitender Nagpal Dr, Anand Sinha Dr

Patient Experience Journal

Anticipating dire consequences, in 2020 the world braced itself for the unparalleled pandemic by resorting to unprecedented measures including stringent lockdowns, unforeseen social isolations, spotlight focus, resource diversions besides reorganized healthcare systems to name the quintessential few. Such unifocal convergence enhanced the vulnerabilities of patients dependent on non-COVID healthcare assistance. For a nation with a meagre allocation of 0.7 hospital beds per 1000 people and a lopsided doctor-population ratio of 1:1800, COVID-centric measures created unintended complications. Ironically, many succumbed in myriad ways, not due to the pandemic but due to the attributes of the survival measures. While such consequences cannot …


Using A Multidisciplinary Data Approach To Operationalize An Experience Framework, Kevin Spera, Garrett Holmes, Sunni Barnes Nov 2021

Using A Multidisciplinary Data Approach To Operationalize An Experience Framework, Kevin Spera, Garrett Holmes, Sunni Barnes

Patient Experience Journal

Like many healthcare organizations, Baylor Scott & White Health (BSWH) is awash with data. Often, this data is used in siloed departments to monitor safety and quality, make local business decisions, and motivate staff to improve processes to achieve sustained excellence and market share. As margins get thinner and competition from various disrupters increases, organizations have tried to improve the patient experience to remain viable as part of a calculated strategy. Nevertheless, these entities have struggled to focus limited resources for sustained improvement in patient experience. This article details how a large Texas-based healthcare system "operationalized" The Beryl Institute's Experience …


Patient Engagement In An Academic Community-Based Primary Care Practice’S Management Committee: A Case Study, Emmanuelle Trépanier, Marie-Pascale Pomey, Paule Lebel Nov 2021

Patient Engagement In An Academic Community-Based Primary Care Practice’S Management Committee: A Case Study, Emmanuelle Trépanier, Marie-Pascale Pomey, Paule Lebel

Patient Experience Journal

Patient engagement in primary care has been the focus of many studies; however, little research has evaluated its added value to organisational management in an academic community-based primary care practice (ACBPCP). In 2017, managers of an ACBPCP in Montreal, Canada, decided to integrate patients into the organization’s management committee to enhance the quality and relevance of decision-making for clinical services, education and research.

Objectives were to 1) assess patients’ role and influence on an ACBPCP management committee’s decision-making process; 2) identify the facilitators of and obstacles to patient involvement in this context; and 3) evaluate the impact of this innovative …


Comparing Patient Experience Survey Scores Between Telehealth And In-Person Ambulatory Pediatric Subspecialty Visits, Sean T. Bomher, Matthew Wood, Elizabeth Uhlhorn, Sandro Marques, Lee Kwiatkowski, Natasa Tekic, Cameron D'Alpe, Natalie M. Pageler, Lane F. Donnelly Nov 2021

Comparing Patient Experience Survey Scores Between Telehealth And In-Person Ambulatory Pediatric Subspecialty Visits, Sean T. Bomher, Matthew Wood, Elizabeth Uhlhorn, Sandro Marques, Lee Kwiatkowski, Natasa Tekic, Cameron D'Alpe, Natalie M. Pageler, Lane F. Donnelly

Patient Experience Journal

To determine the effect of encounter methods on patient experience, we evaluated patient experience survey data comparing scores between telehealth and in-person visits and pre-COVID-19 and COVID-19 time periods. Pediatric subspecialty visits were either in-person or via telehealth and received the same 16-question patient experience survey. Top box (5/5) scores were compared between in-person and telehealth visits for pre-COVID-19 and COVID-19 periods as well as between periods for in-person and telehealth visits. In addition, for both time periods and encounter methods, correlation analysis was performed to evaluate best correlation between likelihood to recommend practice and the 15 other survey questions. …


Building Patient Participation In Quality Of Care Through The Healthcare Stories Project: A Demonstration Program In New York State Hiv Clinics, Abigail Baim-Lance, Freda Coren, Margaret Brown, Hazel Lever, Daniel Tietz, Bruce Agins Aug 2021

Building Patient Participation In Quality Of Care Through The Healthcare Stories Project: A Demonstration Program In New York State Hiv Clinics, Abigail Baim-Lance, Freda Coren, Margaret Brown, Hazel Lever, Daniel Tietz, Bruce Agins

Patient Experience Journal

There is growing recognition that patients should play a central role in defining, assessing, and improving the quality of healthcare, thereby enhancing patient experiences. Healthcare organizations struggle to meet these goals, which require becoming more patient-centered and patient-involved. The Healthcare Stories Project (HCSP), a demonstration program of the NYS Department of Health AIDS Institute, aimed to address this. HCSP comprises three, stepwise activities to: 1) Capture how patients define and experience ‘quality of care’ in the clinic; 2) Engage patients and providers as equal partners in understanding and improving the quality of care; and through partnerships, 3) Support the building …


Sociodemographic Characteristics And Patient And Family Experience Survey Response Biases, Lauren N. Brinkman, Myra S. Saeed, Andrew F. Beck, Michael C. Ponti-Zins, Ndidi I. Unaka, Mary C. Burkhardt, Jareen Meinzen-Derr, Samuel P. Hanke Aug 2021

Sociodemographic Characteristics And Patient And Family Experience Survey Response Biases, Lauren N. Brinkman, Myra S. Saeed, Andrew F. Beck, Michael C. Ponti-Zins, Ndidi I. Unaka, Mary C. Burkhardt, Jareen Meinzen-Derr, Samuel P. Hanke

Patient Experience Journal

Enhancing Patient and Family Experience (PFE) is vital to the delivery of quality healthcare services. Sociodemographic differences affect health outcomes and experiences, but research is limited on biases in PFE survey methodology. We sought to assess survey participation rates across sociodemographic characteristics. This retrospective study analyzed a health system’s ambulatory PFE survey data, collected January 1 – July 31, 2019. Outcomes of interest were rates of survey response, completion, and comments. Predictors included respondent-reported race, ethnicity, language, and measure of social deprivation attached to a respondent’s home address. Addresses were geocoded to census tracts. The tract’s degree of socioeconomic deprivation …


Testing Of Patients First In A Real-World Setting, As A Patient Experience Accreditation Tool For Hospitals And Clinics, Carlos Bezos, Rosa M. Salazar, María Caballero Apr 2021

Testing Of Patients First In A Real-World Setting, As A Patient Experience Accreditation Tool For Hospitals And Clinics, Carlos Bezos, Rosa M. Salazar, María Caballero

Patient Experience Journal

Many healthcare providers are developing patient experience strategies and investing in this area. Yet, patients have no means to know if a hospital is following proper patient experience standards. For this reason, it is important to certify that hospitals and clinics follow own a patient experience policy and apply patient experience standards. This is the reason why the accreditation Patients First was developed. The goal of this study is to test the accreditations’ feasibility in a real-life environment. The accreditation was tested at the Guadarrama Hospital, nearby Madrid in Spain. A mixed team between Guadarrama staff and the Institute for …


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 Apr 2021

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 …


The Association Between An Established Chief Experience Officer Role And Hospital Patient Experience Scores, William Breen, Seongwon Choi, Kristina "Ria" Hearld, Stephen J. O'Connor, Edward Rafalski, Nancy Borkowski Apr 2021

The Association Between An Established Chief Experience Officer Role And Hospital Patient Experience Scores, William Breen, Seongwon Choi, Kristina "Ria" Hearld, Stephen J. O'Connor, Edward Rafalski, Nancy Borkowski

Patient Experience Journal

The healthcare industry is currently reacting to multiple stakeholders demanding improvements to the patient experience. Some healthcare organizations are implementing new management structures, i.e., the role of Chief Experience Officer (CXO). This study statistically reviewed descriptors associated with hospitals that have and have not created and filled the role of CXO and, more importantly, measured the association between the CXO role and results of patients’ perceptions of their experience of care as measured by publicly reported Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) results. This study was conducted utilizing data gather on hospitals in three states, California, Florida, …


No Visitors Allowed: How Health Systems Can Better Engage Patients’ Families During A Pandemic, Jennifer Schlimgen, Amy Frye Apr 2021

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).


The Paradoxical Injunctions Of Partnership In Care: Patient Engagement And Partnership Between Issues And Challenges, Khayreddine Bouabida, Marie-Pascale Pomey, Genevieve Cyr, Ursulla Aho-Glele, Breitner Gomes Chaves Apr 2021

The Paradoxical Injunctions Of Partnership In Care: Patient Engagement And Partnership Between Issues And Challenges, Khayreddine Bouabida, Marie-Pascale Pomey, Genevieve Cyr, Ursulla Aho-Glele, Breitner Gomes Chaves

Patient Experience Journal

Partnership in care and patient engagement is an expanding approach and tremendously promising for improving the quality of healthcare services. However, the approach could be subject to many issues and challenges of various kinds. In this paper, we develop a reflection of the challenges and issues that the approach of patient engagement and partnership in care is facing. After a brief presentation of certain key concepts of partnership in care and patient engagement, we discuss in this paper the most worthy of consideration issues that we identified and classified as follows: Political, Financial, Organizational, Clinical, and Ethical Issues. We then …


The Use Of Organizational Assessments In Improving Patient And Staff Experiences In The Ambulatory Care Setting, Linda C. Lombardi, Andrew B. Wallach Md, Paula A. Wilson Mba Nov 2020

The Use Of Organizational Assessments In Improving Patient And Staff Experiences In The Ambulatory Care Setting, Linda C. Lombardi, Andrew B. Wallach Md, Paula A. Wilson Mba

Patient Experience Journal

As the needs of patients evolve, healthcare organizations must diversify their approach to improving patient experience. Their programs should encompass the medical, mental, spiritual, and emotional needs of patients and their family members and the staff who care for patients. This case study examines the results of the evaluation to assess the effectiveness of organizational patient experience efforts. The Beryl Institute’s Experience Assessment was the evaluation tool administered and revealed the areas in which the organization was performing well and where improvements were needed. In collaboration with Ambulatory Care and Finance, the Office of Patient Experience targeted the Adult Primary …


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 Nov 2020

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 …


Management Of Frequent Ed Users By Community Paramedics Improves Patient Experiences And Reduces Ems Utilization, Oluwakemi Aiyedun Adio, Laura Ikuma, Sonja Wiley Nov 2020

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 Nov 2020

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. Nov 2020

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 Nov 2020

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 Participation Strategies: The Nursing Bedside Handover, Irene Decelie Nov 2020

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 Nov 2020

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 …


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 Nov 2020

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)


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 Nov 2020

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

Patient Experience Journal

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


Moving Forward To The Future Of Healthcare, Jason A. Wolf Nov 2020

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 Aug 2020

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 Aug 2020

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 …