Patient Experience Journal (PXJ, The Beryl Institute)
Not a member yet
638 research outputs found
Sort by
Beyond platitudes: A nurse’s journey of self-reflection and vulnerability
Get PDFThe efforts taking place in healthcare organizations and communities globally should represent what is best in humanity, perhaps even more so in this unprecedented time of COVID-19. This short personal narrative is the acknowledgement that “best” needs to start with “me” and my story of self-reflection and journey of vulnerability.
Experience Framework
This article is associated with the Staff & Provider 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
The impact of parental presence in the NICU on hospital alienation and other distress measures
Get PDFParental 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 \u3c 28 weeks or \u3c 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) Access other PXJ articles related to this lens. Access other resources related to this lens
Patient education in the hospital-at-home care context
Get PDFThe objective of this study is to describe adult patients’ and their family caregivers’ experiences of patient education in the hospital-at-home care context. Methods included a cross-sectional descriptive study including three hospital-at-home units in Finland. Adult, non-palliative patients (n = 27) and their family caregivers (n = 18) were interviewed pairwise by telephone, and the data analyzed with inductive thematic content analysis. COREQ guidelines were used to plan and guide the study design. Results concluded both patients and family caregivers seemed to have quite similar knowledge expectations, which only differs slightly from findings in other in- or outpatient contexts. In the hospital-at-home context, there is an evident need for clinical coaching and guidance in relation to self-care activities and for future-oriented education about the services available after hospital-at-home care. Six themes describing patients’ and family caregivers’ experiences of patient education in the hospital-at-home care context emerged, from patient-centered, goal-oriented and empowering education to the bypassed education of both patients and family caregivers. We conclude that in the hospital-at-home care context, the patient is not alone in his/her illness but instead the patient and family caregiver together form a unit. Thus, the need exists for extended, iterative patient education in hospital-at-home care: need for clinical coaching, guidance and support in relation to self-care activities and for future-oriented education about the services available after HAH care. Such extended patient education, in which patients’ family caregivers were included, strengthens the patient-family caregiver relationship, minimizes caregiver burden and the need for additional healthcare services.
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
Special Issue – July/August 2020: Sustaining a Focus on Human Experience in the Face of COVID-19
Get PDFAt 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 addressing the physical and emotional needs of those providing and supporting the delivery of care. While the pace of the crisis can be overwhelming and challenging, incredible efforts are underway to manage the intricacies of human need at this time. At its heart, healthcare has been, is and will remain human beings caring for human beings, and in that light significant efforts are taking place, no matter how big or small to address the human experience happening now. Whether addressing the challenges of connection in isolation for patients and families to the burdens of endless and continuous shifts for those providing care, the efforts to ensure not only positive clinical outcomes but also a human experience has never been greater.
The moment in which we find ourselves reinforces more than ever that experience is not about survey scores or satisfaction. Rather it is about the efforts we make to acknowledge the person in front of us, to listen, to show dignity and respect, to communicate in ways that are clear and understandable and ultimately to stand with one another. The efforts taking place in healthcare organizations and communities globally represent what is best in humanity, and we invite you to – and hope you will – share your stories here
A commitment to hope
Get PDFOn 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 includes the best of real-time insights and research, powerful stories and personal reflections that are so central to this time, one that has called on all of us to dig deeper, ask ourselves personal and essential questions and remind ourselves what really matters overall. We are deeply moved and inspired by the speed, thoughtfulness and comprehensive nature with which our contributors engaged, many of whom were tackling this crisis but still took time to contribute to a conversation beyond themselves. That may be the most powerful lesson of all: that in struggling with each of our own personal or individual organizational issues, we remained called to come together to share something beyond ourselves. As you review the pages that follow, we challenge you to uncover a new idea or practice; discover an inspiration or opportunity to reflect, release or breathe; find a seed of hope. For in the generous and both heartful and thoughtful words of our contributors, we not only capture this moment in our history, we also feed the roots of possibility from which we will all spring in the days ahead.
Experience Framework
This article is associated with the Culture & Leadership 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 len
Caring for kids in the time of COVID-19
Get PDFThe 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 are fighting so hard for— normalcy and connection.
If a hospitalized child shows symptoms of COVID-19, frontline staff must assume the child is positive for COVID-19 until proven otherwise. Therefore, all staff who enter the child’s room must wear PPEs, including a gown, gloves, mask, and face shield. These precautions can be frightening, even for kids who have spent months in the hospital for whom this new gear is an obvious sign that something has changed, and not for the better. Thankfully, child life specialists are still in the hospital and have mastered support for patients during COVID-19 testing while respecting hospital rules that prevent them from entering patient rooms to limit exposure and use of scarce PPE. The preparation, coping strategies, distraction, and verbal support before, during, and after the test, along with a selection of rewards for successfully completing the procedure, make something difficult a little bit easier.
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
A COVID-19 patient’s experience: Engagement in disease management, interactions with care teams and implications on health policies and managerial practices
Get PDFThis 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 COVID-19 patient’s experience and health outcomes: information seeking, communication, and self-awareness. Physical, mental and emotional support from family members were also perceived to have a positive impact on the patient’s experience and outcomes. Three key dimensions were perceived to have negatively impacted the COVID-19 patient’s experience and health outcomes: federal government’s lack of coordination in crisis management, CDC’s slow actions in disease control and prevention and primary care provider’s absence in care continuity. Patients must take active ownership and engage consistently in their disease management, which could help improve their own experiences and overall health outcomes. Proactive engagement in care and in making treatment decisions may improve disease outcomes even when coordinated responses to health crises were lacking in the country and care continuity by providers was absent. Interactions with care providers also present opportunities for patients to help providers improve their practices. Patients are integral members of care teams.
Experience Framework
This article is associated with the Infrastructure & Governance 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
Insights from individuals with chronic conditions in the context of COVID-19
Get PDFThe objective of this prospective survey series was to evaluate knowledge and concerns related to the COVID-19 pandemic among individuals with one or more chronic conditions, including cardiometabolic, autoimmune, respiratory and cancer diagnoses. Two surveys were distributed consisting of up to 55 items (March; n=1069) and up to 71 items (April, n=1126), with 24 items repeated from the first survey. Questions focused on healthcare access, barriers and concerns related to the COVID-19 virus. Descriptive analysis evaluated central tendencies, spread, and frequencies of the demographic data, disease states, and survey results within and between the two survey timepoints. Results from 416 individuals (38.9%) on survey 1 and 425 (37.7%) on survey 2 were analyzed. Participants were predominantly female (85%) and white (67%) with 7% residing in rural areas and 69% employed. Respondents reported an average of 2 chronic conditions and 62% would be classified as “at risk” for COVID-19 complications by the CDC. Only 20% reported a conversation about COVID-19 with a healthcare provider, 9% reported anxiety, 35% indicated loneliness. Level of concern about COVID-19 contracting the disease, cost of treatment/complications, medical access, and process of being treated was associated with increased anxiety (p\u3c0.001) and wearing a facemask (p=0.01). Analysis suggests that analyzing concern and its association with health behaviors and anxiety should be a priority for innovative solutions. Insights into how the COVID-19 pandemic is impacting individuals with chronic conditions are imperative to inform tailored interventions to support individuals at higher risk of serious complications and death.
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
Patient experience in a pediatric emergency department during COVID-19
Get PDFThe COVID-19 pandemic has changed many dynamics in healthcare in the United States. This study explores an increase in patient experience (PE) scores in a pediatric emergency department. Visits were analyzed before and after March 8, 2020, corresponding with the first local case of COVID-19. Changes in the patient population and characteristics of survey responders were analyzed. Overall, the number of daily visits decreased (113 vs 36/day) and survey response rate decreased (3.7 vs 2.8%, p = 0.03), but PE scores increased (87.21 to 93.73, p = 0.002). Comparatively, an increase in patients with higher acuity levels by Emergency Severity Index (ESI), white/Caucasian race, and non-Hispanic ethnicity were observed in the population. Similarly, responders were comprised of higher ESI and a similar racial shift. No correlations, however, were identified between these factors and PE score. Overall, while the data suggest some changes in demographics and acuity, they do not adequately account for the increase in PE score. Further evaluation of the patient/provider relationship during a global pandemic is justified.
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
The rapid increase in telemedicine visits during COVID-19
Get PDFPrior to the COVID-19 pandemic, facilitated telemedicine encounters were available at outreach locations; however, our tertiary children’s hospital had not invested widely in direct to patient telemedicine. Our daily pediatric subspecialty visits dropped from an average of 2066 visits a day prior to COVID-19 in our community to 1000 patients a day during the study period. Over the four-week period from April 15 to May 12, 2020, patient and family experience ratings of percentage of positive responses (9 or 10) on the provider rating 0-10 scale between telemedicine and in-person visits were compared for our pediatric subspecialty clinics using a Pearson’s Chi Squared test, p-value \u3c0.05 determined significance. Several process measures were compared using the same method. Total visits conducted via telemedicine and survey response rates were calculated with frequencies and percentages. Of the 14,428 subspecialty visits attended, 10,135 (70.2%) were telemedicine. Developmental and Behavioral Medicine saw the highest proportion of patients (99.5%) via telemedicine while Cystic Fibrosis, Dentistry, and Neurosurgery saw no telemedicine patients. Telemedicine visits yielded a 6.5% higher survey response rate than in-person visits. Overall rating of 9 or 10 for telemedicine visits was 87.9%, compared to 83.9% for in-person visits (p-value = 0.07). All process measures scored higher in telemedicine visits. This may reflect telemedicine visits’ ability to improve the efficiency of care delivery: removing the need to travel, park, navigate the building, register for the visit, obtain vital signs and wait for the provider.
Experience Framework
This article is associated with the Innovation & Technology 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 len