Patient Experience Journal (PXJ, The Beryl Institute)
Not a member yet
638 research outputs found
Sort by
Navigating the “Perfect Storm”: Leading with a commitment to human experience
Get PDFAs was known even prior to the pressures placed on us by the pandemic, what lied just beneath the surface of our work in healthcare was clear. A healthcare workforce feeling overworked and overwhelmed. Communities seeing and feeling the impact of inequities and disparities in care. Patients and care partners working diligently to elevate what matters to them. A tearing at the social fabric that has led to incivility and even mortal violence. And healthcare systems laboring to maintain financial viability in the face of global economic uncertainties. We knew the opportunities then, and we cannot escape them now. This is a perfect storm for healthcare, one that I know weighs on and buffets all who are engaged in and served by the healthcare ecosystem. But amid this turbulent reality, I believe there is hope, a space for optimism and a solid foundation on which we can and must build. It comes in our commitment to the human experience.
Experience Framework
This article is associated with the Culture & Leadership lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this len
Living with brain cancer: From researcher to patient
Get PDFAs an academic researcher, my work-life revolves around testing the efficaciousness of pharmaceutical drugs on the prevention of cardiac dysfunction, arrhythmias, and sudden cardiac death in animal models of heart disease. I never thought I would go from someone studying a life-threatening disease to a patient living with one in twenty-four hours. Yet, that transformation occurred October 8, 2019. I was just appointed to Assistant Professor at Johns Hopkins University School of Medicine (JHUSOM), yet after sitting for my professional headshot I had a grand mal seizure. I cannot recall this event, but I bit the tip of my tongue off, dislocated my right shoulder, and underwent violent contractions. I was rushed to the Emergency Department, thankfully within the same building (JHUSOM). A few scans later, I was told I had ‘a mass’ in my brain that needed to be removed immediately. Fearing the worst, I followed the advice of my newly appointed neurosurgeon and scheduled surgery for October 19, 2019. I had no time to process what had and what was about to happen. What followed was two years of post-surgical recovery during a global pandemic, my own personal awe in the power of medicine, resurgence of my seizures and tumors, and now – my road to recovery through chemotherapy and radiation. These two years have taught me so much about the day-to-day difficulties patients with chronic diseases live with, strategies I use to cope with my new normal, and most importantly, the necessity of caregivers.
Experience Framework
This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens
Public satisfaction with COVID-19 vaccination program in Saudi Arabia
Get PDFThe challenges posed by the ongoing COVID-19 pandemic have required the introduction of new care delivery models and procedures. For the foreseeable future, vaccine administration will be a key part of the patient experience journey. It is important therefore to understand and evaluate experiences of individuals taking the vaccination, an area which requires considerable attention. To address this, the COVID-19 Vaccination Satisfaction survey was developed and administered at several healthcare facilities across Saudi Arabia. Between January 2021 and end of December 2021, a total of 1,699,177 completed surveys were collected. The survey results suggest high satisfaction among participants taking the vaccine; however, satisfaction with information and communication about the vaccine was relatively low. Results from this survey are updated daily and provide unique insights into the key strengths of the vaccination process, as well as aspects within the process that require improvement.
Experience Framework
This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework. (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens
Current PROM and PREM use in health system performance measurement: Still a way to go
Get PDFThere is a growing impetus to “measure what matters” to enable health systems to optimise value-based, person-centred healthcare. This paper describes the critical importance of patient-reported outcome and experience measures (PROMs and PREMs) in this pursuit and provides an in-depth overview of how PROM and PREM programs differ between England, the United States, and Australia. A comprehensive timeline of PROM, PREM, legislation/policy, and value-based purchasing (pay-for-performance) program implementation accompanies this discussion. Importantly, this paper highlights disparities between these nations’ PROMs and PREMs programs, evidencing that we still have a way to go towards equal health system performance measurement globally.
Experience Framework
This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework. (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens
Virtual cardiac rehabilitation: A rapid shift in care delivery in response to the COVID-19 Pandemic
Get PDFCardiac rehabilitation is an integral part of recovery from a critical cardiac life event. This preventative strategy involves exercise rehabilitation, education, lifestyle modification, and self-management coaching – preparing patients for lifelong changes. Prior to the COVID-19 pandemic, these activities were supervised by clinicians in-person, on hospital grounds, and in large groups. However, due to pandemic regulations in Canada imposed in March 2020, all in-person group activities were restricted. Within the first two months of the pandemic, almost half of cardiac rehabilitation services in Canada closed and half of their employees were deployed to other areas. To continue to provide patient care and ensure high-quality patient experience and recovery, cardiac rehabilitation services in Fraser Health, British Columbia rapidly transitioned to exclusively virtual methods of care delivery. Two years later, we are still providing this virtual model of care. This case study reflects on the experience of virtual care delivery of cardiac rehabilitation by participants and health providers. It outlines the process, the challenges, and the outcomes experienced with shifting to a new standard of care. The virtual participation rates showed a slight increase, with a significant reduction in time to access care, and increased adherence to the rehabilitation program. Overall patient satisfaction and provider experience continue to be positive. The consensus is that cardiac rehabilitation should not be optional, even during a global crisis.
Experience Framework
This article is associated with the Innovation & Technology lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this len
The impact of patient-centered care on health outcomes in adolescents living with diabetes
Get PDFThere is increasing evidence from research studies that suggest patient-centered care has a relationship with good clinical outcomes. In Singapore, there are no studies done to assess and address the issue of patient-centered care and its association with the adolescent’s ability to manage their chronic medical condition, such as Type 1 Diabetes Mellitus. The relationship between the patient and clinicians has changed from a paternalistic form to a position which aims to foster patient-centered care. More importantly, this study aims to show the adolescent’s readiness and ability to assume a more mature role in management of their own medical condition. Data collection involved 85 adolescents with diabetes who were surveyed during their follow-up outpatient clinic visit at KK Women’s and Children’s Hospital (KKH) Diabetes Transition Clinic. The study offers important clinical and nursing implications as well as policy contributions. Improved patient–provider communication as well as high quality discharge, care transition and emotional support from providers fostered by patient-centered care are likely to contribute to better patient reported psychosocial health outcomes. These findings imply that public healthcare leaders have to place emphasis in the patient and their families’ experience equivalent to those in patient safety, clinical quality, and hospital finance.
Experience Framework
This article is associated with the Quality & Clinical Excellence lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens
An exploration of psychological trauma and positive adaptation in adults with congenital heart disease during the COVID-19 pandemic
Get PDFThe growing population of adults with congenital heart disease (CHD) often have lifelong experience of dealing with potentially traumatic health crises and medical uncertainty whilst facing increased vulnerability to post-traumatic stress disorder (PTSD). The COVID-19 pandemic presents additional challenges for this population including increased risk of health complications, shielding and strict social distancing, changes to medical care provision and social stigma. Despite such challenges, adults with CHD have the potential to also experience positive changes, yet little is known as to what helps cultivate positive adaptation and post-traumatic growth (PTG) within this context. The current study comprised a cross-sectional, anonymous, online study exploring psychosocial measures of traumatic experiences as well as protective factors that mitigate the risks to the mental health of adults with CHD (n=236) during the pandemic. Closed and open-ended questions and a series of standardised psychosocial measures of traumatic experiences, coping mechanisms, emotional regulation and PTG were used. Findings suggest the CHD population are at increased risk of PTSD which may be exacerbated by the COVID-19 pandemic. However, positive adaptation may promote post traumatic growth. In particular, emotional regulation is associated with post-traumatic growth. We recommend a growth-focused, psychologically and trauma-informed approach to medicine and public health, recognising the importance of supporting mental health and promoting living well with CHD during the COVID-19 pandemic and beyond. These findings are likely generalisable to other lifelong health conditions and shielding populations.
Experience Framework
This article is associated with the Quality & Clinical Excellence lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens
Engaging patients and families in developing, implementing, and evaluating hospital at home: A Canadian case study
Get PDFThe Hospital at Home (HaH) care model is naturally patient-centred, with improved patient and family experiences and outcomes firmly anchoring the innovative approach to care. Existing literature focuses largely on the health care and patient care outcomes of HaH; however, to date, none of the identified literature has reported on engaging patients and families in the development, implementation, or evaluation of the HaH model of care. A multi-stakeholder, Patient-Oriented Research team in Victoria, British Columbia, Canada engaged patients and family/friend caregivers (PFCs) across all components of the HaH program. Guided by best practices in patient and public engagement, the team collaborated to 1) explore the potential impact of in-home acute care on PFCs’ experiences; 2) identify health, social, and practice outcomes that matter to PFCs; 3) examine the social and environmental factors which may impact delivery of HaH; and 4) inform the HaH evaluation framework that includes PFC priority measures related to experience and outcomes. A public, online survey (n=543 PFC respondents) revealed both program-specific and evaluation-specific themes. These included a focus on patients achieving their own health goals and standard health outcomes, as well as patients and caregivers receiving training to support care at home. Engaging PFCs throughout HaH conception and implementation ensured the end program accurately reflected the priorities, concerns, and values of those that HaH is meant to serve.
Experience Framework
This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens
Rules of engagement: The role of mistreatment from patients in the nurse, physician and advanced practice provider experience
Get PDFThe objective of this study is to examine the incidence of reported stress due to mistreatment by patients toward clinicians and the role of mistreatment from patients along with organizational factors in clinician distress. A survey of clinicians was conducted at a large academic medical center, resulting in a final analytic sample of 1,682 physicians, nurses, advanced practice providers and clinical support staff. Nurses reported the greatest incidence of mistreatment by patients as a major stressor (18.69%), followed by Advanced Practice Providers (11.26%), Clinical Support Staff (10.36%), and Physicians (7.69%). Logistic regression analysis was conducted to determine the relationship of individual- and organization-level characteristics with the odds of reporting mistreatment from patients as a major stressor. Overall findings indicate that nurses and those who work in the ER and ambulatory or outpatient clinics were more likely to be stressed from mistreatment by patients than other clinicians. Stress due to mistreatment by patients was also associated with higher Well-Being Index (WBI) distress scores, rapid changes in workflows or policies, ongoing care of COVID-19 patients, under-staffing, and low perceived organizational support. Gender or sexual minorities (not identifying as male or female) and younger (18-34 years of age) healthcare workers were also more likely to experience stress from mistreatment by patients. Individual resilience was not statistically significantly associated with reported stress from mistreatment by patients. Organizations must examine expectations for patient and visitor behavior in tandem with service standards for clinicians toward patients.
Experience Framework
This article is associated with the Staff & Provider Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens
Understanding patient and caregiver perspectives using a dyad approach for data collection: A systematic review of the literature
Get PDFTreatments outside of a clinical setting may be managed independently by the pediatric patient, independently by a caregiver, or by the patient and caregiver together. Best practices for pediatric clinical outcome assessment (COA) recommend patient-reported outcome (PRO) and/or observer-reported outcome (ObsRO) measures to assess the patient experience of a condition or its treatment. However, a dyad approach where patients and caregivers can complete assessments together may be useful for assessing a shared treatment experience that may not be adequately captured by a PRO and/or an ObsRO. A systematic, targeted literature review of empirical literature was conducted to identify and describe published studies detailing dyad patient-caregiver outcome reporting approaches. The search was run in the MEDLINE®, Embase, and PsycINFO® databases using the OvidSP platform and was limited to English-language studies published within 10 years of the conducted search on 28 September 2021, and 13 articles were selected for full-text review based on pre-specified criteria. Advantages and disadvantages for use of a dyad data collection approach are discussed. Though not appropriate for all settings, dyad data collection may be useful for situations where the best practice approach to measurement does not capture all relevant perspectives, or the use of PRO and ObsRO also does not comprehensively capture all relevant concepts. In following, it may offer a pragmatic solution that can minimize the use of proxy assessment and limit missing data, particularly in research involving a shared patient and caregiver treatment experience.
Experience Framework
This article is associated with the Staff & Provider Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens