Patient Experience Journal (PXJ, The Beryl Institute)
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Living with COVID-19 in the community during the first wave of the pandemic: Lessons from patients for healthcare providers and policy makers
Get PDFThis qualitative descriptive study explores patients’ experiences of living with COVID-19, in the community, during the early stages of the pandemic. Between October 2020 and April 2021, fifteen semi-structured, video-recorded interviews were conducted, via Zoom, with participants in five Canadian provinces. Participants self-identified as having had a confirmed or suspected case of COVID-19. The constant comparative method was used to produce a thematic analysis of findings. Key findings include 1) PCR tests were not widely available in Canada, during the first wave, so many participants lacked a confirmed diagnosis and, subsequently, encountered challenges accessing specialist medical care; 2) Rapidly changing protocols around testing also impacted return to work as employers’ requirements were sometimes misaligned with public health guidelines; 3) Participants often found public health measures to be illogical, inconsistent, or sub-optimally implemented, and frequently perceived them as politically motivated rather than evidence-based; 4) some individuals with persistent symptoms had difficulty gaining acknowledgement and support for what is now more widely acknowledged to be long-COVID; and 5) The view that healthcare providers need a more nuanced approach to patients who lack a confirmed diagnosis or present with hard-to-explain symptoms was widely shared. There is the need for greater responsiveness to the lived experiences of patients with COVID-19, especially those with persistent symptoms, in developing clinical pathways and social supports.
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
The case for patient-reported pleasure
Get PDFPleasure is a cornerstone of human behavior. Its lack of consideration in the medical sciences has been to the detriment of all patients. The process of including pleasure as a medical outcome has multiple beginnings. A health-related pleasure scale must be developed for clinical purposes and original research must be conducted to establish the added value of measuring pleasure. Treatment comparisons, prediction models for recovery, side-effect investigations, and more may benefit from the collection of patient-reported pleasure. Furthermore, simply inquiring about a patient’s pleasure may serve as a positive intervention by giving them permission to discuss more than the illness in their life. This can enhance the patient-provider relationship and expand the goal of treatment from illness elimination to wellness expansion. Reporting on pleasure can also benefit patients by reallocating their attention towards the positive, rather than the often consistent orientation towards the negative as seen in most patient questionnaires. When we consider what treatments to discuss, we need to know the areas of life from which our patients draw pleasure. The experience of pleasure is what keeps us alive and in pursuit of life. The seeming discomfort and resulting avoidance of medical professionals around the topic of pleasure may be one of the most significant remaining examples of societal stigmas impacting healthcare today.
Experience Framework
This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework (https://theberylinstitute.org/experience-framework/). Access other PXJ articles related to this lens. Access other resources related to this lens
Informed consent in surgical practice with patients’ experiences: A cross-sectional study
Get PDFThis study aims to evaluate patients\u27 experiences and perspectives regarding informed consent in surgical practice. Data for this cross-sectional study were collected from 276 patients using a questionnaire developed by Falagas et al. Descriptive statistics were employed for all questions. Statistical tests such as the Mann-Whitney U test, Kruskal-Wallis test, and Spearman\u27s rank correlation analysis were performed, and Cohen\u27s effect sizes were reported. IBM SPSS 23.0 was used for all analyses, and p\u3c0.05 was considered statistically significant. A high score on both The Delivered Information Index and The Patient-Physician Index represents a positive informed consent process. Among the participants, 65.2% indicated that they understood all parts of the consent form. Of all patients, 92.8% reported that information about the specific surgical procedure was provided by physicians. However, 47.5% of the patients reported that they did not feel comfortable with their surgeons. The mean score of the Delivered Information Index was 5.63 (2.38). The mean patient-physician relationship score was 14.38 (3.31). There was a moderate positive correlation between the delivered information index and the patient-physician relationship (r=0.50; p\u3c0.001). In addition, there was a moderate positive correlation between the delivered information index and the time spent on the informed consent process, as well as between the patient-physician relationship and the time spent on the informed consent process (r=0.52; r=0.40, respectively). The study emphasized the lack of communication between patients and physicians, the limitation of information on treatment risks, adverse effects, and alternative treatment options.
Experience Framework
This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework (https://theberylinstitute.org/experience-framework/). Access other PXJ articles related to this lens. Access other resources related to this lens
Informative material for patient empowerment in sensitive situations
Get PDFWomen diagnosed with HPV face a hard-to-understand disease that may impact their psychological and physical health and may pose challenges communicating with healthcare providers in sensitive settings. We posit patient empowerment through targeted educational materials can improve sensitive communication and lead to better health outcomes. This study measured the impact of a patient-empowerment process used in a gynecology clinic for HPV patients to improve sensitive communication during medical-related meetings and on subsequent patient empowerment outcomes. The empowerment process was based on expert-vetted informative material made accessible in the physician’s waiting room on tablet devices. Communication between physicians and patients was measured during medical visits via a direct observation, encoding process. Empowerment items were tested following medical visits. The results were compared to a control group that received non-medical, lifestyle material. 237 female, gynecology patients from a large, private clinic participated. Using expert-vetted, relevant material to enhance patient education in a clinical setting results in higher levels of patient empowerment. Physician interaction impacts patient empowerment as do various communication behaviors and this can lead to positive health outcomes.
Experience Framework
This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://theberylinstitute.org/experience-framework/). Access other PXJ articles related to this lens. Access other resources related to this lens
Four commitments for the future of healthcare: Reflecting on a decade of Patient Experience Journal
Get PDFThis issue closes the first decade of Patient Experience Journal’s (PXJ) contribution to evidence and innovation, to sharing stories and research, to elevating the conversation and pushing the boundaries of the experience movement. We have never hesitated to nudge at the status quo or to respond with agility to the challenging moments we have faced. We have welcomed diverse voices as contributors, and we have seen an even more diverse readership. In reviewing the pages of PXJ over the last decade, we see a true evolution of the experience movement itself. The words of our contributors have provided a lens into the expanding perspectives that encompass the growing experience conversation overall. So where does this lead us? What does the path for the next decade of PXJ look like? In many ways, that is up to you to decide. The voices of this community are the colors on the palette of PXJ. Your voices will paint the picture for the next decade. So this question is not a call to action for experience as an idea, per se, but rather a challenge for all of us committed to this collective movement. The decade this issue closes serves as the foundation on which we can build even greater things. While PXJ is an academic journal, it is more so a launching pad for ideas and opportunities, for hopes and possibilities. I believe there is great power in expressed ideas, there is even greater power found in a community that fosters those ideas for not only what they can become, but also what they will impact as a result.
Experience Framework
This article is associated with the Culture & Leadership lens of The Beryl Institute Experience Framework (https://theberylinstitute.org/experience-framework/). Access other PXJ articles related to this lens. Access other resources related to this lens
Draws and windfalls: Comparing patient experiences in inpatient telehealth and non-telehealth acute care units
Get PDFThe global COVID-19 pandemic has challenged health care delivery in many ways. One solution from the pandemic that offers potential upside is the expansion of telehealth as a means to provide high quality, cost-effective, and safe care while also maintaining excellence in patient and family experience. While most examinations of the use of telehealth over the pandemic have focused on the expansion of outpatient telehealth, few have explored the use of telehealth for hospitalized patients. This article will examine the influence of telehealth use on patient experiences among acute care patients. Inpatient telehealth acute care (ITAC) is a novel modality for hospitalized patients that enables providers to engage with a remote medical unit to ask questions regarding the care plan, medications, and discharge instructions. This case study will compare the experiences of two inpatient hospital units within the same institution to determine the degree to which patient experiences are influenced by telehealth capabilities. The results find that the telehealth unit has negligible differences in patient evaluations of provider communication but shows significant differences in patients’ experiences of staff responsiveness and the environmental aspects of care captured via the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey (quietness and cleanliness of care). Future scholarship should seek to determine the extent to which these capabilities influence nurses and other care providers.
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
Everything I needed to know to be a pediatric emergency room doctor, I learned as a waitress
Get PDFWhen I began my career as a pediatric emergency medicine physician, I believed I was prepared to take on any medical emergency. However, I was not prepared to provide a good patient family experience. Throughout my years of training, I was not taught productive ways of interacting with patients and was unaware of how impactful the patient family experience would be. Negative patient family experience scores affected my interactions with patients, my shared decision making and my ability to provide quality care. After working to improve my scores, I focused on skills I obtained in a non-medical setting, as a waitress, and applied them to my patient interactions. These 10 tips, which I have adapted from the hospitality industry, will help with not only improving your patient-family experience scores, but improving your entire interaction with patients in the emergency room or any clinical environment in which you work.
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
Partnering with healthcare: The experiences of consumer representatives
Get PDFThe importance of consumer advocacy in person-centred healthcare service planning and delivery is growing. In Australia, the role of the Consumer Representative (known internationally as Patient and Family Advisors ) is to advocate for patients and their families\u27 needs to improve service planning, healthcare design, and service evaluation. As the role of consumer representatives evolves and matures within the healthcare setting, it is crucial to comprehend their experiences and identify key insights to support and enhance their role within healthcare organizations. To achieve this, a focus group of four Consumer Representatives was conducted and their views were compiled into a single commentary. Our findings suggest that Consumers Representatives are driven by a desire to assist others, but they may feel dissatisfied if their role is perceived as tokenistic or lacks meaningful engagement. Consumer Representatives suggested various ways to improve consumer participation, including role clarification, meeting facilitation, and the development of supportive consumer networks.
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
Special Issue 2024: Transforming Experience in Non-Hospital Settings
Get PDFPatient Experience Journal(PXJ) is excited to announce the call for submissions for its July/August 2024 special issue focused on exploring how healthcare organizations are transforming experience in non-hospital settings. So much of the experience conversation has been focused on and driven by the hospital setting – from acute care, to pediatrics, safety net hospitals and more. While this focus remains essential to some of the most critical care delivered in the healthcare ecosystem, it is important to recognize the volume of care being provided in new and existing settings. This special issue seeks to uncover and elevate the practices happening in non-hospital settings and highlight research and evidence showing how efforts in these spaces is truly transforming the human experience in healthcare. These efforts can be the implementation of new programs or processes, research that tests new processes or programs, cases that share how organizations are working to elevate the experience they provide, be it in clinics or outpatient spaces, and even in people’s homes. As the healthcare marketplace continues to dramatically shift, so too do the opportunities to ensure a conversation on experience is deeply rooted in these transformations. The reality is that as much as has been learned from and shared by the hospital setting, there is a vast expanse of organization experience and expertise that can advance the broader experience movement. We believe this issue can inspire just that
Psychometric properties of the Impact Index in patients with chronic conditions
Get PDFThe purpose of this paper was to extend the generalizability of the patient-reported Impact Index by assessing convergent validity in patients with common chronic conditions. We conducted a cross-sectional survey of 1,000 English-speaking patients aged 21 and older who visited their provider in the past 6 months and were included in one or more of a hospital’s chronic condition registries. Patients completed a survey that included the Impact Index (4-item measure of how impacted a patient is by their health condition: range 0-12, higher score indicating greater negative impact on quality of life), overall health, and self-report of diagnosis of 8 chronic conditions. Patients were categorized as having symptomatic conditions (one or more symptomatic conditions) or asymptomatic conditions. We hypothesized that Impact Index scores would be negatively correlated with overall health, positively correlated with the number of chronic conditions (using Pearson correlations) and would be higher for symptomatic than asymptomatic conditions (using an independent t-test). Of the 492 respondents (50% response rate), 381/392 eligible respondents completed all Impact Index items. Impact Index scores ranged from 0 to 12 (M=6, SD=4). As reports of overall health increased (i.e., from poor to excellent), Impact Index scores decreased (r=-0.59, p\u3c.001). As the number of chronic conditions increased, so did Impact Index scores (r=0.33, p\u3c.001). Patients with symptomatic conditions reported higher Impact Index scores (M=6.6, SD=3.5) than those with asymptomatic conditions (M=4.1, SD=3.5, p\u3c.001, d=.70). These findings support the validity of the Impact Index for patients with a range of chronic conditions.
Experience Framework
This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework (https://theberylinstitute.org/experience-framework/). Access other PXJ articles related to this lens. Access other resources related to this lens