Medicine and Health Sciences Commons^™

Meaningful Engagement Of Patients And Families In A Complex Trial Of Advance Care Planning In Primary Care, Angela K. Combe, Deborah L. Dokken, Mary M. Minniti, Annette M. Totten

Patient Experience Journal

Engagement 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 …

Patient Perspectives Of Health-Related Social Needs Screening In An Urban Academic Adult Primary Care Practice, Antony Nguyen, Joselvin Galeas, Jane Jih

Patient Experience Journal

Health-related social needs (HRSNs) affect health outcomes and healthcare utilization. Patients’ perspectives on the incorporation of HRSN screening in primary care settings is limited. We sought to explore adult primary care patient perspectives of HRSN screening from optional patient-provided free-text comments as part of a pilot self-administered HRSN screening survey on seven domains of HRSNs from the Accountable Health Communities HRSNs Screening Tool. The survey was available in English, Chinese or Spanish with a section titled “Comments” that invited patient respondents to provide anonymous free-text responses. We performed a thematic analysis of the written patient comments. Of the 679 participants …

Everything I Needed To Know To Be A Pediatric Emergency Room Doctor, I Learned As A Waitress, Sarah Gard Lazarus

Patient Experience Journal

When 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 …

Going From An Academic Medical Center To A Community Hospital: Patient Experiences With Transfers, Alexander Kazberouk, Nicole Boyd, Sandra Oreper, Michael Chang, James D. Harrison, Priya A. Prasad, Ari Hoffman

Patient Experience Journal

Academic medical centers (AMCs) often operate at or near full capacity, which leads to delays in care while smaller community hospitals may have excess capacity. To address this issue and to match patient needs to care acuity, patients may be transferred from an AMC emergency department for direct admission to a community hospital. We aimed to explore the experiences and perspectives of patients who were transferred. We randomly selected patients transferred between February 2019 and February 2020. We conducted structured thirty-minute interviews containing fixed response and open-ended questions focusing on the transfer rationale and experience, care quality, and patient financial …

Global Child And Family-Centered Care Fellowship, Education And Mentorship For Pediatric Healthcare Professionals: A Literature Review, Ashley Zheng, Bobbijo Pansier

Patient Experience Journal

Child- and family-centered care (FCC) is increasingly accepted and implemented to optimize the healthcare experience for patients, their families, and healthcare professionals. Standish Foundation for Children, a 501(c)(3) non-profit, has designed and piloted a fellowship to educate pediatric healthcare professionals in FCC & psychosocial care via an inquiry and mentorship model in Tbilisis, Georgia. This review aimed to evaluate and synthesize existing literature on psychosocial and FCC mentorship for pediatric healthcare professionals in four parts: ongoing need, effects on healthcare professionals, effects on children and their families and/or caregivers, and in cross-country healthcare settings. Reviewers searched open-source databases for articles …

Patient And Provider Experiences With Virtual Care During The Covid-19 Pandemic: A Mixed Methods Study, Mars Zhao, Hisham Elshoni, Jennifer O'Brien, Erin Barbour-Tuck, Mary Ellen Walker, Heather Dyck, Andrea Vasquez, Eric Sy, Angela Baerwald, Clara Michaels, Rejina Kamrul, Olivia Reis, Brenda Schuster, Barb Beaurivage, Adam Clay, Mark Lees, Jonathan Gamble

Patient Experience Journal

The COVID-19 pandemic prompted the rapid uptake of Virtual Care (VC). Positive patient outcomes with VC are previously reported but little is known about the experiences of patients and providers using VC during the pandemic. We aimed to describe patient and primary care provider experiences, satisfaction, perceptions, and attitudes to VC during the COVID-19 pandemic that might explain adoption of VC across the continuum of care and inform sustained uptake. We conducted a sequential explanatory mixed methods study using online surveys and virtual interviews with a convenience sample of primary care providers and patients in a Canadian province (July – …

When Healthcare Leadership And Philanthropy Lead To An Improved Patient Experience: The Paul Lepsoe Music Initiative, Sara Olivier Rn Bscn Mn, Corianne Bell Ba Mus, Cheryl Jones Registered Psychotherapist, Mta, Phd, Jerry M. Maniate Md, M.Ed, Frcpc, Facp

Patient Experience Journal

Through an unprecedented collaboration between an academic acute tertiary care hospital (The Ottawa Hospital (TOH) and a community-based professional orchestra (Ottawa Symphony Orchestra (OSO), the Paul Lepsoe Music Initiative represented an innovative partnership focused on improving patient care via (a) the integration of live music in waiting areas of the hospital’s Cancer Center and (b) the creation of individualized music therapy interventions on the inpatient Palliative Care Unit. Patient, family, and volunteer/staff feedback further refined the intervention throughout the duration of the Initiative; a qualitative process that provided insight into the overall patient experience and opportunities for patients and families …

Adapting And Responding To A Pandemic: Patient And Family Advisory Councils In Children's Hospitals During Covid-19, Pam Dardess, Deborah L. Dokken, Ndidi I. Unaka, Jesse Hsu, Mindy Hoang, Andrew F. Beck, Beverley H. Johnson

Patient Experience Journal

This mixed-methods study investigated the effects of the COVID-19 pandemic on Patient and Family Advisory Councils (PFACs) within children’s hospitals in the United States. Specifically, the study sought to understand how PFACs adapted operations as a result of the COVID-19 pandemic, how patient and family advisors (PFAs) were engaged in the response to COVID-19, and the intersection of the COVID-19 pandemic with PFAC diversity, equity, and inclusion. The study consisted of a survey distributed to 228 children’s hospitals, with a 73% response rate, and in-depth interviews with selected survey respondents (n=12). While COVID-19 temporarily disrupted PFAC operations and forced rapid …

Understanding Both Sides Of The Blood Draw: The Experience Of The Pediatric Patient And The Phlebotomist, Julie R. Piazza, Sandra Merkel, Brooke Rothberg, Joan Gargaro, Kristin Kullgren

Patient Experience Journal

A phlebotomist’s words and actions play a crucial role in success of a blood draw and in providing a supportive patient experience. This study examined use of comfort measures during a pediatric blood draw. The phlebotomist’s use of soft words, positioning, distraction, coaching/support were observed with sixty children between 3-14 years of age during a blood draw. The level of fear /anxiety before and during the blood draw was recorded by an RA. The child’s level of fear/anxiety was observed and reported by the parent/caregiver after the procedure. Comfort measures provided by phlebotomists, the parent/caregiver’s report of their child’s usual …

The Experiences Of Rural British Columbians Accessing Surgical And Obstetrical Care, Aria Jazdarehee, Anshu Parajulee, Jude Kornelsen

Patient Experience Journal

The attrition of small volume surgical and maternity services in rural Canada over the past three decades has made access to these services especially challenging for rural citizens. While many of these closures have occurred as consequences of regionalization, a strategy to regionally centralize healthcare services, many studies investigating outcomes of regionalization have focused on costs and medical endpoints rather than the direct experiences of the rural patients affected. In this study, we aimed to understand and document the experiences of rural residents accessing procedural and maternity care both locally and away from home. This study is part of a …

Finding Common Threads: How Patients, Physicians And Nurses Perceive The Patient Gown, Christy M. Lucas, Cheryl Dellasega

Patient Experience Journal

Evidence-based care is standard practice in medicine, but the patient gown has fallen outside the scope of scholarly research. The current gown renders a patient vulnerable, diminishing patients’ sense of identity, agency, and dignity with its one-size-fits-none design. The impact on providers is similarly neglected. Our objective was to explore how patients and providers derive meaning from patient gowns. A convenience sample at an academic medical center was interviewed utilizing a standardized framework developed by a medical student and two PhD-prepared researchers with experience in qualitative methods. The study was inductive in nature, seeking to understand perceptions of the patient …

Using Patient Experience In Optimizing The Total Knee Arthroplasty Patient Journey, Nienke Wolterbeek, Dieuwertje J. Hiemstra, Fiona A. Van Der Hoeven, Kiem G. Auw Yang

Patient Experience Journal

Information was used to improve the patient journey and to achieve patient-centered care. Patients (>18 years, purposive sampling) were interviewed once at one point of their total knee arthrosis journey within the hospital setting. Patients were accompanied and observed during their hospital visit by one of the 19 healthcare professionals which were trained as interviewers. A qualitative research approach with in-depth and semi-structured interviews using a standardized interview guide were used to gather an in-depth understanding of the perceptions of patients. Interviews were written out with the emphasis on positive and negative feedback, quotes and observations that were made. …

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 …

How Younger Adults With Psychosocial Problems Experienced Person-Centered Health Consultations, Line Soot, Kirsten S. Freund, Jørgen Lous, Mikkel Vass, Lotte Hvas

Patient Experience Journal

Much attention is focused on the social determinants of health. Family medicine is challenged with a growing number of vulnerable persons with psychosocial or lifestyle related problems. The objective of this work was to explore how vulnerable younger adults experience person-centered preventive health consultations with their general practitioner. The design and setting for this work were a secondary qualitative analysis of a randomized controlled trial (RCT) in Danish general practices. Younger adults (20-45) were consecutively invited to answer a screening questionnaire about psychosocial and lifestyle-related problems when visiting general practice (28 general practitioners (GPs)) for ordinary consultations. The 30% most …

Patients Educating Health Care Providers On Lynch Syndrome, Kelsey Hennig, Barry Decoster, Rebecca Chu, Wendy Parker, Lisa Campo-Engelstein, Allison M. Burton-Chase

Patient Experience Journal

Objective: Lynch syndrome (LS) patients are at an elevated risk for early-onset cancers, including endometrial and colorectal (CRC). Prior research has shown a deficit in provider knowledge of LS, which may affect patient satisfaction and adherence to recommended screening and surveillance regimens. Studies suggest patients with LS may educate providers perceived as lacking LS knowledge; however, little is known about these interactions. The goal of this study is to assess patient-reported outcomes from clinical interactions where LS patients educate their providers.

Methods: Participants (n=55) were asked to complete an in-depth telephone interview.

Results: Out of 55 participants, …

Patient Perspectives On Quality Family Planning Services In Underserved Areas, Debora Goldberg, Bhakthi Sahgal, Tishra Beeson, Susan F. Wood, Holly Mead, Aliyah Abdul-Wakil, Hallie Stevens, Pinyao Rui, Sara Rosenbaum

Patient Experience Journal

Ongoing challenges impede efforts to improve the quality of family planning services in underserved communities, which by definition lack sufficient numbers of physicians and other health professionals. Challenges to improving the quality of family planning services include financing difficulties, lack of standards, training deficiencies, as well as little understanding and attention to patient preferences. The objectives of this study were to explore female patients’ preferences for family planning services in underserved areas and to develop a framework to help providers improve patient-centered care. The methodology for this paper included mixed methods research including a survey of women between the ages …