Patient Experience Journal (PXJ, The Beryl Institute)
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The silence of mitotic figures
Get PDFA career in medicine is guided by the patients you treat and those who have taught you to treat these individuals. Communication is of utmost importance in all aspects of healthcare. However, there are times when communication can be difficult. This story takes you through a physician’s experience that led to a career in women’s healthcare, reflecting on the silence that prevailed as her journey began.
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 len
Meaningful engagement of patients and families in a complex trial of advance care planning in primary care
Get PDFEngagement of Patient and Family Advisors (PFAs) is increasingly recommended as best practice in research. During the design and conduct of a large trial of advance care planning (ACP) in primary care, we expanded on the funder’s (Patient-Centered Outcomes Research Institute®) requirement for an engagement plan and sought to develop an innovative approach to fostering and sustaining meaningful engagement of PFAs throughout all phases of the trial. Structures were developed that integrated PFAs into planning and provided the foundation for their ongoing participation. A continuous quality improvement approach became the framework for ongoing engagement. This involved setting goals; collecting data through surveys, interviews, and observations; and using data to inform revisions to the engagement approach. We also tracked PFA activities and ideas and documented how they impacted the trial. This article summarizes our experience and describes the challenges we faced and how we addressed them. We also outline key lessons learned about encouraging participation; approaches to preparation and coaching; fostering equity across PFAs and other roles in the trial team; creating a range of opportunities that match PFA skills, preferences, and expectations; the importance of regular feedback; and the need for training of all trial staff. Our experience demonstrates that successful and impactful engagement is possible but requires consistent commitment and intentional dedication of sufficient resources.
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
Caregiver burden: Support needed for those who support others and the National Health Service
Get PDFThis literature review focuses on the complexities and inequalities of informal caregiving in the UK and was inspired by the story of the following individual: EL is a 68-year-old Caucasian lady who attended Movement Disorder Clinic and was diagnosed with Parkinson\u27s Disease Dementia following many years of symptoms. The diagnosis came as a big relief to EL and her daughter (SL) who were eager to get treatment started as soon as possible. EL lives alone with SL and solely relies on her for care and support. SL does not have children and devotes her daily routine to looking after her mother, never spending more than a few hours away from her. SL has found this situation very challenging, while EL has felt she has lost her independence. This frustration on a background of mutual love and concern was evident from both parties during the appointment. Informal carers play a crucial role in looking after individuals and provide massive relief to healthcare systems but are often left without support. This puts themselves and the people they care for at risk of poor physical and psychological outcomes. The number of informal carers continues to rise but staggering rates of burnout are still observed. By understanding the complexities and emotional impact of this role, together with the inadequacies of current social care policies, we can strive to reveal areas of improvement that can grant carers the support they deserve to carry on performing their invaluable roles.
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
Breaking the transactional mindset: A new path for healthcare leadership built on a commitment to human experience
Get PDFNumerous health care publications have focused on the compelling need to improve patient experience and the associated improvements necessary to address workforce well-being. The COVID-19 pandemic exacerbated and illuminated long-standing problems in health care including workforce shortages, inequity in health care delivery outcomes, care provider burnout, and overall societal structural racism.1,2 The Beryl Institute’s Nursing Executive Council (NEC) manuscript Rebuilding a Foundation of Trust: A Call to Action in Creating a Safe Environment for Everyone3 focused on actions and behaviours to heal relationships and build trust between care providers and leaders with commitments to safety, empathy, shared decision making, transparency, growth and development. Research studies abound offering new frameworks and interventions intending to strengthen systems of care that respect whole person needs. The nursing profession has always been anchored in holistic person-centered care yet continues to be challenged in work environments laden with fragmentation and barriers to human caring. The purpose of this paper is to review the dominance of transactional business mindsets and practices today that may foster those challenging environments and assert that the use of Service-Dominant Logic (SDL) demonstrates the importance of human relations in developing effective and sustainable organizational performance. Ultimately it can help us lead differently at all levels as we work to transform the human experience in healthcare.
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
Transforming the American experience of death: What dreams may come?
Get PDFThere is no means to evaluate the death experience in the US healthcare system. Other countries have established population-wide measures to evaluate and improve the dying experience for patients and their families. With an increasing population of advanced-age persons, changes in sites of death, and a continually fractured healthcare delivery system, there is a need to establish a universal assessment of the quality of death in the US. In this commentary, we outline the need for such an assessment and build off of previous literature on the various existing assessments of the quality of death that have typically been reserved for end-of-life care specialties. Based on the aforementioned reasons and poor performance relative to other nations, there is a need for political attention to assessing the quality of American death experiences for patients and for their families. Absent such a measure, there will never be an incentive to improve the quality of death for patients and their families and the US healthcare system will continue to neglect this important aspect of American life.
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
Seeking answers through the pain
Get PDFThis article tells the story of the history and outcome of a 64-year-old woman who had suffered pain and other symptoms for over a decade. The woman thought nothing could be done to help her condition. The procedure that was eventually undertaken brought about a huge transformation in pain reduction and helped with mobility and posture. This operation came into being in relatively recent times and has revolutionised the treatment of people with hip-spine syndrome. The technique called an in-situ arthroplasty operation allows accurate restoring of leg length, together with restoring the natural alignment of hip structures.
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
Leveraging the intersectionality of healthcare and hospitality to diversify workforce talent and enhance patient experience
Get PDFAs healthcare becomes more of a consumerism-based industry, organizations and leaders are embracing innovative approaches and models to drive patient choice and brand loyalty. Northwell Health, New York State’s largest comprehensive health system, has integrated hospitality as a core pillar within its dynamic patient experience strategy. This informative case report highlights Northwell’s pragmatic approach to designing, implementing, and sustaining an experiential internship program entitled, Hospitality in Healthcare Internship. The program has resulted in action-oriented patient experience performance improvement opportunities as well as create a robust pipeline of hospitality-minded talent into the organization.
Experience Framework
This article is associated with the Environment & Hospitality 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
Patient-centered care frameworks, models and approaches: An environmental scan
Get PDFAlthough the definition of patient-centered care (PCC) remains unclear, researchers and healthcare professionals describe the concept as treating the patient as a unique human being with consideration for their physical and psychosocial needs and emphasize the importance of shared-decision making between patients and healthcare professionals. However, discussion around the connection and overlap between PCC and patient and family engagement (PE) has been limited. Some authors describe PE as an operationalization of PCC, while others consider PE a type of PCC. An enhanced understanding of PCC might allow for improvements in implementing PE across healthcare systems. Insight into the operationalization of PCC at a practical level may be attained through exploring models and programs introduced by various governments. We conducted an environmental scan examining models, approaches, and programs of PCC implemented by the governments of nine developed countries at regional and national levels, aiming to understand better how PCC is operationalized. We found seven major themes indicative of critical features of PE within PCC models: 1) recruitment and representation; 2) training and staff engagement; 3) rapport and relationships; 4) tools and support; 5) compensation and reimbursement; 6) knowledge translation; and 7) evaluation. Finally, we comment on how well the included PCC models promote diversity and cultural competence while highlighting the importance of cultural sensitivity and discussing potential strategies to integrate PCC and PE into healthcare activities.
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
“Feedback is indeed a dainty dish to set before the Trust”: Comparing how online patient feedback is responded to and used across three hospital Trusts in England
Get PDFPatients are increasingly reporting about their healthcare experiences in an unsolicited manner online. This emerging resource may offer valuable opportunities for organisational learning. Our study aimed to compare how online patient feedback was responded to and used for improvement in three hospital Trusts. Ethnographic data were collected across three hospital Trusts in England, recruited according to the way they responded to online patient feedback. Findings from three case studies were brought together using a reflexive thematic analysis approach, via a multi-case analysis. Three key themes were highlighted. Firstly, the organisational rationale for engaging with patient feedback influenced levels of compassion felt for feedback providers, and in turn, the extent feedback was valued and learned from. Secondly, multidisciplinary collaboration between patient experience teams and the wider organisation helped to disseminate ownership felt for feedback and overcome ‘contextual blindness’. Thirdly, the risk of patient feedback falling into an ‘abyss’ was reduced when staff prioritised learning over and above collecting and reporting data, and when managers disseminated a passion for improvement. Overall, online feedback was considered a courageous step into the unknown. However, these barriers could be culturally overcome. Our multi-case analysis demonstrates that there is still a way to go for some organisations to culturally embrace online patient feedback as a valued means to improve. However, we present five key suggestions to inform policy and practice and support the use and usefulness of online patient feedback for organisational learning.
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
How are the vibes? Patient and family experiences of rapport during telehealth calls in palliative care
Get PDFInteractions with rapport are considered essential to palliative care and beneficial to patient outcomes. With the current interest in telehealth, more knowledge is needed about rapport during telehealth encounters in palliative care from the patient and family viewpoint. The objective of this study was to explore patient and family experiences of rapport with health professionals during telehealth interactions in the community palliative care setting. This was a qualitative Interpretive Description study, with 18 patients and 11 family member participants recruited from four hospice locations in Aotearoa, New Zealand. Semi-structured interviews were conducted, and audio recorded between November 2020 and May 2021. Data was transcribed and analysed using Reflexive thematic analysis. A COREQ checklist was completed. The major theme was “The health professional’s vibe” which developed into two subthemes: 1) Relaxed comfortable encounters, with behaviours that aided developing rapport, and 2) difficult uncomfortable encounters with behaviours detracting from developing rapport. A key finding is that the health professional’s care, presence, and communication skills affected development of rapport more than the telehealth medium used. Participants perceived rapport in telehealth calls depending on how they experienced the health professionals’ “vibe.” Rapport occurred in relaxed, comfortable encounters with health professionals who demonstrated intentional presence and caring. However, patients and families experienced uncomfortable encounters without rapport attributable to a lack of health professional presence and caring. More compelling training options are needed for health professionals regarding the development of rapport in telehealth along with further research into the impact of rapport on telehealth outcomes.
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