Patient Experience Journal (PXJ, The Beryl Institute)
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How information sharing can improve patient and family experience in critical care: A focus group study
Get PDFThe 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 expressed the need for personalised information, they also requested practical guidance at appropriate times in accessible formats. The encouragement from staff to keep diaries and record the patient’s journey was very valued and helped recall and share progress in difficult and challenging situations. Support and coordination of care when leaving critical care and the hospital also requires planning and communication with the patient, their family and carers and relevant health care teams. The experience of patients, their families and carers is important to understand in order to ensure future services can be tailored to meet their requirements.
Experience Framework
This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework) Access other PXJ articles related to this lens. Access other resources related to this lens
Patients’ experience in Hong Kong hospitals: A comparison between south Asian and Chinese people
Get PDFPatient 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 used to compare South Asian and Chinese participants’ in-hospital stays. The regression analyses were done before and after adjusting for demographics and after Propensity Score Weighting (PSW). All estimates were accompanied by a 95% confidence interval. Two-sided tests were conducted with a significance concluded by a p-value.
Experience Framework
This article is associated with the Policy & Measurement 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
Addressing social disconnection among frequent users of community hospital emergency departments: A statewide implementation evaluation
Get PDFWe 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” and “social isolation” by stakeholders, met the definition of a structural social connection problem according to our framework. These structural problems led patients to the ED for reasons not always related to their physical health. CHART innovations involving home visit programs, elder services interventions, work flow changes in the ED, and regular telephone follow-ups provided functional level emotional and tangible support to meet these structural problems. We did not find substantive support for mapping interview data to the quality and multi-level dimensions of the framework. Innovations to address high ED use, according to stakeholders, provided functional level emotional and tangible support to address structural level problems of social disconnection. Future work should examine the sustainability of innovations in a value-based healthcare climate, and the effectiveness of these programs on reducing ED utilization.
Experience Framework
This article is associated with the Policy & Measurement 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
Perceptions of care & patient-provider communication by varying identity groups in a collegiate health clinic
Get PDFLGBTQ 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 university in the southeastern United States were surveyed in the summer of 2019. Patients of Color (M = 8.16, SD = 5.69) perceived stronger PPC than Whites (M = 5.41, SD = 5.27), which deviates from much of the current literature available. Heterosexuals (M = 7.82, SD = 5.65) perceived stronger PPC than LGBQ (M = 4.56, SD = 4.98) patients, which aligns with most current literature. Additional research is recommended for generalizability among student health populations in other university campuses and preliminary findings indicate a need to improve PPC between clinicians and sexual minority patients in student health settings.
Experience Framework
This article is associated with the Policy & Measurement 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
Positive patient experience in eye care during COVID-19: A case from Eye Hospital Sistina Oftalmologija
Get PDFCOVID-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 the threat against citizens’ health, within a relatively bounded geographic area. Novel COVID-19 virus struck globally and urged the need for additional knowledge and practice to successfully manage world crises and create positive patient experiences in a pandemic. The Case of Eye Hospital Sistina Oftalmologija in N. Macedonia answers the call by suggesting four managerial best practices that provide its patients with positive experiences during the pandemic by addressing organizational changes, engaging employees, improving communication with patients and recognizing its social responsibilities. This study also offers recommendations for further action in communication and digital transformations related to acute and long-term care and suggests questions for further exploration. Findings provide important insights for medical institutions and health care providers.
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 student\u27s lesson in healthcare disparities
Get PDFThis narrative was born out of a desire to examine the effects of healthcare disparities among minority populations. As a medical student, I had the opportunity to spend a 4-week rotation working with physicians specializing in palliative care during what is arguably the most challenging public health crisis in over a century. This provided a unique perspective that allowed the observation of the intersection of healthcare systems with underserved and vulnerable minority populations, and palliative medicine. It also allowed us to observe the negative consequences it has had, particularly during a hard-hitting global pandemic. The paper gives a brief introduction to the problem of healthcare disparities as described by the WHO and CDC. We discuss some of the statistical data that show how certain demographics like workers in service industries, or meat-packing facilities are more likely to contract the COVID-19 virus, and how these same populations are disproportionately affected by the pandemic due to their limited access to healthcare systems. We then discuss the case of a COVID-19 patient that was treated by a multidisciplinary team during this period. This patient, like many others, was an immigrant with limited proficiency in the English language, as well as a limited medical education. We provide details about his medical course during his admission, and we try to highlight some of the pitfalls in the healthcare system as it relates to this patient’s prognosis and healthcare outcome.
Experience Framework
This article is associated with the Policy & Measurement 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
Cancer patient perspectives during the COVID-19 pandemic: A thematic analysis of cancer blog posts
Get PDFThe 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 a sufficient sample was achieved. Subthemes were hierarchically organized into major theme categories and illustrative quotations were identified. A total of 80 blog posts posted between January 20th and April 6th, 2020 were analyzed, revealing 23 subthemes. Major theme categories included: the direct and indirect impacts of COVID-19 on personal health and the health of others, comparisons between COVID-19 and the cancer experience, the impact of COVID-19 on social and psychological wellbeing, perspectives on government and the public response to COVID-19, and coping mechanisms and gratitude. COVID-19 has significantly affected cancer patients, survivors, and family members. Subthemes and quotations relating to perceived medical abandonment, patient mental health, and the impact of previous cancer trauma on the ability to cope with COVID-19 highlight the need for healthcare professionals to be cognizant of evolving patient concerns, so they may provide reassurance and appropriate care to their patients in these exceptional circumstances.
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
Responsiveness of primary health care services in Nigeria: The patients’ perspective
Get PDFHealth 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 years but more were female (95%), had attained less than the tertiary level of schooling (60.9%), and currently married (92.3%). The highest proportion of patients reported good responsiveness for dignity (81.8%) and least proportion for the choice of care provider (53.8%). Patient-level predictors of good responsiveness in relation to autonomy were younger age (p = 0.003) attainment of tertiary level of education (p = 0.001); tertiary education was associated with confidentiality (p = 0.009) and those who are not married with prompt attention (p = 0.027). Dignity, confidentiality, and prompt attention were identified as priority areas to focus in improving the responsiveness of primary healthcare services in Rivers State.
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
Paying it forward: A cancer survivor and his wife share their reflections and recommendations as a patient and caregiver
Get PDFI grew up in the north suburbs of Chicago and had a relatively normal childhood but not necessarily an easy one. Shortly after graduating from Indiana University, I moved out west and have been working in the entertainment industry ever since. My life has been a beautiful and interesting adventure with twists and turns I could have never predicted.
In 2016 it seemed like everything was really coming together. I had been happily married to my wife and business partner Mary Lou Sandler since 2011, and we had been growing our photography/film production studio for as many years. I was in peak physical condition. I felt good. I thought I was ready for the next level in life. In fact, I was declaring it. I was ready! It was of great surprise to us all when on May 4, 2017 I was diagnosed with cancer in the form of a large germ cell tumor, located inside of my chest and aggressively growing into my heart and lung. It’s very easy to fall into the victim role. After being diagnosed, I made a firm decision to instead be the victor... it changed everything. Through a philosophy I call “Embrace Love Free, I began to view cancer in an entirely new way. With the experience of facing an illness, one can grow and evolve in unimaginable ways. When it comes to my caregiver Mary Lou, it’s a similar yet very different story. While we both were on this journey together, I had to drop everything to focus on survival. She had to drop everything to care for me. It is from our own positive experience that we want to see medical professionals improve the experience of cancer patients by incorporating things like meditation, aromatherapy, positive thinking, and healthier food choices
Nursing leadership during COVID-19: Enhancing patient, family and workforce experience
Get PDFThe 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 often uncertain decision-making, adapted ways to engage patient and family amidst new care situations and operational policies, delivered care reliably with ever changing metrics and measures and created environments to support and bring smiles to nurses and other health care staff. New opportunities to care for and positively engage patients and families have emerged.
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