Patient Experience Journal (PXJ, The Beryl Institute)
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How COVID-19 changed frontline healthcare workers’ experiences: A narrative inquiry into the impact of chronic burnout on a surgical physician assistant’s wellness
Get PDFBurnout is an occupational phenomenon resulting from unmanaged chronic workplace stress. Since COVID-19 started, burnout among healthcare workers has worsened and become a public health crisis. Wellness is about leading a physically, mentally, and spiritually healthy lifestyle to achieve one’s full potential through positive affirmations. Its multiple dimensions include (1) physical, (2) emotional, (3) intellectual, (4) occupational, (5) social, and (6) spiritual. Extant empirical literature lacked regarding surgical physician assistants and how chronic burnout affected their wellness. This longitudinal narrative inquiry thus aimed to explore the perceived impact of a surgical physician assistant’s chronic burnout during the COVID-19 pandemic on her physical, mental, and emotional wellness through her lived work experiences from the onset to the major surges of COVID-19 positive cases (2020, 2021, 2022). The study participant provided the researcher with her self-recorded personal journals of lived work experiences. The researcher organized and re-presented the narratives, applied thematic analyses to identify key dimensions from the narratives, and grouped them into positive-effect and negative-effect dimensions. Three positive-effect dimensions were (1) resilience and healthcare leadership competencies, (2) work support system, and (3) family-and-friend support system. Six negative-effect dimensions were (1) lack of federal leadership and coordination, (2) unhealthy work conditions, (3) caring for the critically ill, (4) inequity in work-location arrangements, (5) frustrated and angry patients and families, and (6) increased workload. Healthcare policymakers and industry leaders must pay immediate attention to the Quintuple Aim’s 4th and 5th aims to address healthcare workers’ burnout and wellness, and inequity within the healthcare workforce.
Experience Framework
This article is associated with the Staff & Provider 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
The frontier for human experience is closer than we think
Get PDFWhen we think of frontiers, we think of boundaries between the known and unknown, the edge we see in the distance, something that is always just over the horizon. Yet when we step into what was once the frontier, the horizon moves on us, with new distances to cross, edges to reach. It is this dynamic of frontiers, wrapped in our individual and shared experiences of the last few years that shape this very special issue. It is also why now more than ever frontiers are an important part of our transformation. Frontiers that push us beyond where we can see, and frontiers of rediscovering so much of what we may need to rebuild. The experience movement is a journey through frontiers, around us, in front of us and inside of us. They connect us and push us, the reveal our power and purpose and we must never let them be the reasons we do not take that next step. The frontiers of experience are closer than we think. They are, because of what each of you do each day for one another. And that care, that hope, may be the greatest outcome of all.
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
Listening as medicine: A thematic analysis
Get PDFRealizations of the importance of “the art of medicine” in trust-building and patient satisfaction have resulted in the incorporation of narrative medicine programs into training curricula. By learning how to respond to patient stories as well as communicate their own, healthcare providers can ensure that their patients feel heard and respected. This study seeks to define what constitutes empathetic listening through a qualitative analysis of personal narratives collected from patients, caregivers, and providers across an urban academic healthcare system. Stories (n=41) underwent thematic analysis to note common experiences related to listening during a health system encounter. Eighteen grounded codes were identified which were abstracted to the following five themes: (1) connection and trust, (2) emotion and vulnerability, (3) objectives and experiences, (4) interaction and opportunity, and (5) challenges of listening. The most common theme of “connection and trust” indicated that active listening and person-centered care were key drivers of patient satisfaction and medical adherence. Encouraging patients and providers to become more comfortable verbalizing vulnerability also provided emotional relief. Taking the time to listen to patient needs and values advanced shared-decision making and facilitated the establishment of care objectives. Storytellers also conveyed the challenges inherent to the listening process. By helping to define empathetic listening, these results may enable the development of healthcare training programs centered on improving clinician communication and patient experience. We hope this study encourages future research devoted to quantifying subjective features such as “connection and trust” and “emotion and vulnerability” utilizing psychometrically validated instruments.
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
A roadmap to engaging patients in research: The experience of a large academic research hospital in Canada
Get PDFRecent definitions of patient engagement in research (PER) emphasize that engagement should be meaningful, active and an equal collaboration across the research continuum. The increased interest in patient engagement is predicated on the recognition by researchers of the unique experiential knowledge provided by individuals with lived experience, ethical obligations to democratize science and that patient involvement can potentially lead to improved outcomes for patients and researchers. Sunnybrook Health Sciences Center is a large academic research hospital in Toronto, Canada which aimed to create clearer pathways for patients to have a more prominent voice in the development, implementation, and dissemination of research. However, to ensure that the policies, practices and resources to support PER would be viewed as meaningful to all stakeholders (including, but not limited to, administrators, clinicians, clinician researchers, scientists, patients, family members and caregivers), a series of structured activities were undertaken to foster collective buy-in and co-create an operational implementation plan for PER. The activities consisted of a consecutive mixed methods approach of three phases of discovery: a survey, focus groups and interviews, and an in-person town hall. We describe our approach to implementation and operationalization of PER at an academic hospital based on five identified priority themes: education and training, partnerships, matching programs, policies and measures.
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
Part of the team: Effecting change and sharing power in healthcare settings
Get PDFIn 2019, we, as a group of patients and researchers, were invited to rethink how the executive board received and responded to patient stories at a specific NHS hospital trust in the UK. Through an iterative series of meetings, we were able to co-identify common concerns and together develop a distinctive narrative framework for effecting change by sharing patient experiences. This narrative framework is designed to help patients position themselves as ‘part of their healthcare team,’ emphasising roles and responsibilities between patients and health practitioners to compare ideals with reality in patient experiences. While the project was promising, several factors led the hospital to withdraw from working with the group—including the COVID-19 pandemic and changes in key NHS staff. In this article, we report on key support structures and obstacles which influenced the project, as well as its outcomes and limitations, with a view to constructively informing future endeavours at other healthcare institutions. We offer concluding reflections on the significance of collective voice, accessibility, administrative support, and senior staff buy-in. We feel these reflections are especially important since the cumulative effects of austerity and the COVID-19 pandemic have made meaningful commitment to patient involvement significantly more challenging for healthcare institutions, both in the UK and beyond.
Experience Framework
This article is associated with the Infrastructure & Governance 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
Patients’ and family caregivers’ experiences with a newly implemented hospital at home program in British Columbia, Canada: Preliminary results
Get PDFThe Hospital at Home (HaH) model of care, which enables the provision of acute-level care in the patient’s own home as an alternative to brick and mortar hospital admission, was introduced in British Columbia, Canada in November 2020, starting with 9 inpatient “beds” in the community. The AT-HOME research group applied a patient-oriented approach to evaluate the patients’ and family caregivers’ (FCGs) experiences with the program as it was implemented and expanded throughout Victoria, BC. In this paper, we discuss the development of the survey instruments, including process and timelines (three phases); and present preliminary findings of the observational research study (six months of patient and FCG feedback data). The preliminary results show that 100% of patients (n=75) and 95% of FCGs (n=57) had an overall positive experience with the program (rated 6-10 on a 10-point scale where 0 meant ‘very poor’ and 10 ‘very good’). 100% of these patients and 96% of these FCGs would recommend the program to their friends and family and 97% of these patients and 96% of these FCGs would choose the program again if faced with the same situation. The preliminary results on metrics pertaining to care quality; information sharing and experiences with the admission and discharge processes; FCG’s roles, medication management, and more are discussed here. The final results of the patient and FCG experiences will be reported at the end of the data collection period. We can conclude that this new HaH program has been positively received by patients and FCGs thus far and they support program expansion
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
A concept analysis of the patient experience
Get PDFPatient 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 seven databases and one search engine, was conducted of existing literature published any time up until September 2021. The search identified 19,447 references of which 436 articles and organizational websites were included. Twenty attributes (n= 20) were found to define the patient experience: (1) communication; (2) respect for patients; (3) information and education; (4) patient-centered care; (5) comfort and pain; (6) discharge from hospital; (7) hospital environment; (8) professionalism and trust; (9) clinical care and staff competency; (10) access to care; (11) global ratings (12) medication; (13) transitions and continuity; (14) emotional dimension; (15) outcomes; (16) hospital processes; (17) safety and security; (18) interdisciplinary team; (19) social dimension; and, (20) patient dependent features. The proposed definition of the patient experience is: “Patient experience is the combination of external and internal hospital processes, patient-centered attributes, patient-staff and staff-staff interactions during all episodes of care.”
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 journey from provider to patient: Lessons learned
Get PDFThe lens through which one experiences a health crisis is influenced by their personal beliefs and experiences as well as by their professional training and circumstances. Parotid (salivary) gland tumors are rare. Having more than one parotid tumor is rarer still. My experience as a clinician and researcher who was diagnosed with two parotid gland tumors was influenced by my life experiences and my professional background. This affected my reaction to the situation and the questions I asked. It also affected my expectations of my providers. This is a reflection on my six-plus-year journey and the lessons learned, both personally and professionally. The journey will be a lifelong one, hopefully full of promise and health.
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
‘Making it Meaningful’: Co-designing an intervention to improve medication safety for people from culturally and linguistically diverse backgrounds accessing cancer services.
Get PDFThis study reports on the process of using an adapted Experienced-Based Co-Design (EBCD) conducted with culturally and linguistically diverse (CALD) consumers and cancer service staff to co-design the novel ‘Making it Meaningful’(MiM) instrument at a cancer service in Australia. Multi-source experiential and contextual information was gathered in phase 1 of the co-design and this evidence, coupled with knowledge gathered via a feedback event was used to inform three co-design workshops in phase 2. A series of meetings were conducted prior to and in between the workshops. Theory was progressively integrated into the workshop content. Two Mandarin speaking CALD consumers and three cancer service staff participated as co-design members. Workshops were supported by a multilingual fieldworker, co-facilitated by researchers and a consumer co-facilitator, and conducted using a hybrid model (face-to-face or online participation). In the first workshop members democratically selected to focus on a strategy to enable CALD consumers to make non-emergency urgent contact with the cancer service for medication related communication. The second workshop resulted in consensus to develop an accessible instrument that would identify appropriate contacts and information sources for medication management between appointments. In the third workshop, the prototype MiM instrument was developed and refined. The MiM is a novel instrument designed with CALD consumers to enhance their knowledge of medication management and empower them to contact cancer service staff about medication safety concerns. Feasibility testing is the next step with successful implementation requiring senior health leadership support and involvement of co-design members as change agents.
Experience Framework
This article is associated with the Quality & Clinical Excellence 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
Perceptive responses and familiar staff facilitate meaningful engagement of older adults and family/care partners in long-term care home implementation science research during COVID-19
Get PDFA novel registered practical nurse-led video conferencing approach using PIECESTM for team-based care planning was developed to engage family/care partners in the care of older adults. The objectives were to: (a) explore the experiences of older adults and family/care partners in collaborating in implementation science research in long-term care (LTC); (b) identify facilitators and barriers to engaging older adults and family/care partners in implementation science research; and (c) share recommendations to support the engagement of older adults and family/care partners in research. A qualitative descriptive design was used. Two older adults and two family/care partners from two Canadian LTC homes were involved in the research. Data, comprised of interviews with older adults and family/care partners, and notes from research team meetings, were analyzed using thematic analysis. Older adults and family/care partners perceived they made valuable contributions to the research project. They expressed beliefs that care delivery required improvements for older adults with responsive behaviours in LTC, which served as motivation to participate in the research project. Facilitating factors included the support of familiar LTC staff for older adults to engage in research activities and understanding the value of PIECES. A barrier to engagement for older adults was research terminology and processes described during team meetings. This research highlighted taken-for-granted factors in a collaborative research endeavour with older adults and family/care partners. One-on-one interaction, follow-up \u27reporting\u27 and presence of familiar LTC staff are needed to support meaningful engagement of older adults and family/care partners in research.
Experience Framework
This article is associated with the Innovation & Technology 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