Medicine and Health Sciences Commons^™

The Silence Of Mitotic Figures, Hope K. Haefner Md

Patient Experience Journal

A 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/).

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Patient Experience In An Interprofessional Collaborative Practice For Underserved Patients With Heart Failure, Connie White-Williams, Maria R. Shirey, Reid Eagleson, Wei Su, Terri Poe, Brittany Fitts, Vera Bittner

Patient Experience Journal

Heart failure is a complex chronic condition that results in multiple patient visits throughout the care continuum. Patient experience has associations with clinical outcomes. The purpose of this study was to examine patient experience among the underserved in a specialized interprofessional collaborative practice heart failure clinic. This prospective study utilized both qualitative and quantitative data to describe the patient experience within an interprofessional collaborative practice. Data were collected from patient experience surveys in 1128 patients seen in the Heart Failure Transitional Care Services for Adults (HRTSA) clinic between January 1, 2018, and December 31, 2021. Interprofessional collaborative practice surveys were …

A Patient Perspective On Information Provision During The Care Path Of Lentigo Maligna, Louis P. Ter Meer, Marleen De Mul, Jan Hazelzet, Clemens Van Eijk

Patient Experience Journal

Patients sometimes experience complex diagnostic and treatment procedures. During these processes, they need to rely on the information provided by the care providers. In particular, if they would like to play an active role in the shared decision-making process, it is important that this information is accessible, complete and understandable. A patient with Lentigo Maligna on the nose has been followed during the process of diagnosis, shared decision-making and treatment. Using the autoethnographical methodology, it was evaluated which sources of information available to the patient contributed to a better understanding, a more active role in the treatment process and a …

Living With Multiple Sclerosis As A Former Marathon Runner: Impact Of Attitude And Past Behaviour On Self-Care Maintenance And Perseverance, Michael Stephanou

Patient Experience Journal

As healthcare professionals, we have a duty to promote the wellbeing of individuals living with chronic diseases and this could be accomplished through the establishment of self-care strategies that are both collaborative and self-directed. Insight into the complex behaviours and backgrounds of individuals who show initiative in dealing with chronic disease could help achieve this by revealing drivers of health-seeking and engaging behaviours. Therefore, by deducing the complex interactions between attitude, past experiences and disease outlook, broader patient welfare could be championed through the implementation of targeted interventions which promote self-care in chronic disease. This article aims to explore these …

Living With Brain Cancer: From Researcher To Patient, Stephen P. Chelko, Daniel L. Fay Ph.D.

Patient Experience Journal

As 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 …

An Exploration Of Psychological Trauma And Positive Adaptation In Adults With Congenital Heart Disease During The Covid-19 Pandemic, Liza Morton Dr, Calum Calderwood, Nicola Cogan, Claire Murphy, Evan Nix, Jacek Kolacz Dr

Patient Experience Journal

The 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, …

Does An Empathic Pre-Visit Conversation With Another Team Member Improve Perceived Surgeon Empathy?, Lindy Derkzen, Janna S E Ottenhoff, Carrie Barron, David Ring

Patient Experience Journal

Orthopedic surgeon specialists can help alleviate symptoms and reduce self-reported activity limitations by addressing stress, distress, and unhelpful cognitive biases regarding pain (e.g., “hurt equals harm”). But noticing mental and social health opportunities in specialty care can harm the patient-surgeon relationship. This study evaluated the ability of an empathic pre-visit conversation by another team member to improve the patient-surgeon relationship measured as perceived empathy. Factors associated with pain intensity, magnitude of self-reported activity limitations, symptoms of depression, and satisfaction with the surgeon were also studied. We enrolled 100 patients visiting an orthopedic surgeon for the first time. Prior to the …

Exploring Peer Mentoring In Pediatric Transition: Perspectives Of Different Stakeholders About Accompanying Patients In Gastroenterology, Guillaume Dumais-Lévesque, Marie-Pascale Pomey

Patient Experience Journal

The literature identifies several issues in the pediatric transition, such as the lack of coordination between pediatric and adult settings and young patients who are not exercising independence in the self-management of their disease. The objective of this study is to explore the potential for a pediatric transition program in gastroenterology, introducing an accompanying patient program to support the transition. A qualitative case study was conducted, including semi-structured focus groups and individual interviews with each group involved in the pediatric transition between two centres in Quebec. A thematic analysis of the collected data was performed using QDA Miner v5.1. In …

Insights From Individuals With Chronic Conditions In The Context Of Covid-19, B. Stephen Burton, Jonathan Patterson, Mackenzie Robinson, Dhiren Patel, Matt Allison, Kelly J. Brassil

Patient Experience Journal

The objective of this prospective survey series was to evaluate knowledge and concerns related to the COVID-19 pandemic among individuals with one or more chronic conditions, including cardiometabolic, autoimmune, respiratory and cancer diagnoses. Two surveys were distributed consisting of up to 55 items (March; n=1069) and up to 71 items (April, n=1126), with 24 items repeated from the first survey. Questions focused on healthcare access, barriers and concerns related to the COVID-19 virus. Descriptive analysis evaluated central tendencies, spread, and frequencies of the demographic data, disease states, and survey results within and between the two survey timepoints. Results from 416 …

Is It Fair To Compare? A Patient And Family Experience Of Two Healthcare Systems And Neurosurgical Teams Within A Two-Week Period, Laura Miller Cpxp

Patient Experience Journal

As the mother of a 28-year-old son with cerebral palsy and hydrocephalus, and as a healthcare consultant focused on patient experience and professional development, I have a unique perspective and skill set. Recently he experienced symptoms that included an excruciating headache, neck pain and lethargy. Fearing his ventriculoperitoneal shunt had malfunctioned, he went to the emergency room and was later admitted on the neuro inpatient floor for a three-day hospitalization. His original shunt had been placed in 1991, and he never had an issue with until August 2018. While in the hospital, he was informed that he was no longer …

Awakening From A Medical Mystery: One Patient’S Experience Of Being Undiagnosed, Dwane Unruh

Patient Experience Journal

This personal narrative pleads for a supportive and comprehensive system or sub-system similar to that which exists for cancer patients, to deal with undiagnosed illnesses. By describing the torment of living with a debilitating illness that medicine could not easily recognize, then by contrasting this experience with my wife’s experience of the cancer care system, and by referring along the way to lessons learned many years ago from reading the works of the inciteful neurologist, Dr. Oliver Sacks, I hope to inspire the medical system to develop a separate, supportive and comprehensive system to deal with the undiagnosed. As it …

Representing The Patient Experience Of Heart Failure Through Empathy, Journey And Stakeholder Mapping, Leanna Woods, Jed Duff, Erin Roehrer, Kim Walker, Elizabeth Cummings

Patient Experience Journal

Heart failure is a long-term condition requiring those affected to manage numerous self-care related activities. People with heart failure report multiple challenges accommodating self-care activities in their every-day life. The aim of this study is to (1) understand the experience of people with heart failure and their caregivers in the local patient population, and (2) visually represent these experiences to inform the design of a mobile health intervention supporting self-care. Seven patients and four family caregivers were interviewed using an empathic approach. Data was collected using rapid design methods including an empathy map to uncover patient and caregiver perspectives and …

The Patient Experience With Shared Decision-Making In Lung Cancer: A Survey Of Patients, Significant Others Or Care Givers, Laurie E. Gaspar, Howard J. West, Bonnie J. Addario, D Ross Camidge

Patient Experience Journal

A survey (via SurveyMonkey) was sent to lung cancer patients, their caregivers or significant others asking about their experience in making difficult treatment decisions. Of the 198 respondents, 118 (69%) indicated that they had faced a difficult decision with respect to their lung cancer treatment. Of those, 73% indicated that they would have desired that the decision be made with their physician using a shared decision-making process, and 58% perceived that such a process had occurred. In addition, only 23% of respondents indicated that they had had the right amount of information when making the decision. Fortunately, only 9% of …

I’M Going To Tell You A Little About Myself: Illness Centrality, Self-Image And Identity In Cystic Fibrosis, Susan Horky Lcsw, Laura Sherman Licsw, Julie K. Polvinen Ba, Medhavi Saxena Md, Michael Rich Md

Patient Experience Journal

This study assessed the illness centrality of adolescents with CF and the specific ways that CF may affect adolescents’ identities, through the qualitative analysis of video narratives. Adolescents with CF were loaned video cameras and asked to “show us your life outside the hospital” and to “teach your healthcare team about your CF.” Four major themes were identified related to illness centrality: CF is Central, CF is Compartmentalized, CF is Integrated into Self Image, CF is Denied. Integration and compartmentalization often co-existed. Four themes emerged related to the role of CF in self-image and identity: (1) Valence (positive or negative); …