Social and Behavioral Sciences Commons^™

The Legitimacy Of The Patient Story: The Unofficial Autoethnography, Kathy Saldana

Patient Experience Journal

While communication is the foundation of patient experience, survey data and comments are the primary source of results. The focus on data, though meaningful, reduces humans to text on reports. With a focus of autoethnography in both her baccalaureate and post-graduate studies, the author, (a fulltime patient experience professional) shares her professional focus on the value of the data and comments, esteeming it all as valuable research given by the only people who can report patient experience – patients. She compares her stance regarding patient experience before and after receiving a diagnosis of breast cancer. The author shares how the …

“You Are The Key”: A Co-Design Project To Reduce Disparities In Black Veterans’ Communication With Healthcare Providers, Anna M. Barker, Renda S. Wiener, Dave Crocker, Makayla Dones, Oluwabunmi Emidio, Abigail N. Herbst, Jenesse Kaitz, Lauren Kearney, Danielle Miano, Gemmae M. Fix

Patient Experience Journal

Interventions are needed to overcome a key barrier to patient-provider communication, namely that patients hesitate to participate in clinical conversations because they believe their expected role is to be passive. This expectation is reinforced for veterans, who replicate their experience of military hierarchy in the patient-provider relationship. Black veterans, moreover, encounter structural racism that compounds this power imbalance. This paper describes a co-designed intervention to empower Black veterans to talk with providers, using shared decision-making (SDM) for lung cancer screening (LCS) as an exemplar. We worked with a diverse group of 5 veterans to develop materials that normalize participating in …

Breaking The Transactional Mindset: A New Path For Healthcare Leadership Built On A Commitment To Human Experience, Kirsten Krull, Jerry Mansfield, Jennifer Gentry, Karen Grimley, Barbara Jacobs, Jason Wolf

Patient Experience Journal

Numerous 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 …

Identifying Sources Of Patient Dissatisfaction When Seeking Care For A Chronic And Complex Disease, Katharine J. Head, Anna K. Forster, Amanda Harsin, Rebecca J. Bartlett Ellis

Patient Experience Journal

Patients’ evaluations of healthcare often rely on patient satisfaction and encounter-specific approaches. Instead, valuable information can be gained by focusing on patient dissatisfaction with healthcare over time. This study examined patients’ sources of care dissatisfaction when seeking healthcare for a long-term chronic and complex disease (CCD). Participants with a CCD called polycystic kidney disease (N=387) completed an online questionnaire with an open-ended question about dissatisfying experiences. Content analysis was used to analyze responses. The coded data resulted in conceptual codes related to dissatisfaction with information, support, and care management. Analysis revealed the type of healthcare provider is often …

How Are The Vibes? Patient And Family Experiences Of Rapport During Telehealth Calls In Palliative Care, Wendy English, Jackie Robinson, Merryn Gott

Patient Experience Journal

Interactions 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 …

Digital Patient Engagement At A Perioperative Surgical Home Implemented Community Hospital, Srinivasan Sridhar, Amy Mount Hunter, Bernadette Mccrory

Patient Experience Journal

Patients in rural areas typically require more perioperative ‘optimization’ for surgery. The rural healthcare systems often overwhelmed with coordinating perioperative services and deliver less than optimal surgical outcomes. This is due to limited supporting microsystems and ability to effectively engage and track patients over the 120-day perioperative period to limit post-surgical complications. The study assessed longitudinal patient engagement within a newly established Perioperative Surgical Home (PSH) at a rural community hospital serving 10+ surrounding counties to identify barriers and best practices for engagement. A digital patient engagement platform was implemented and used to assess longitudinal patient outcomes and engagement from …

Patient Experiences Through Head And Neck Cancer: Information Delivery Combatting Psychological Distress, Eleah Stringer Msc., Julian J. Lum Phd., Jonathan Livergant Dr., Andre Kushniruk Phd.

Patient Experience Journal

As part of a larger study investigating the utility of electronic decision support tools for patients with head and neck cancer (HNC), this article describes the patient experience of receiving cancer treatment in British Columbia, Canada. It aims to give voice to the patient experience and recommend a model of psychological adjustment for clinicians and clinical service management to consider to refine patient centric care pathways for HNC. Based in phenomenology, semi-structured interviews were conducted with 12 survivors of HNC, audio-video recorded, and thematically analyzed. Three themes were identified: (1) patients have high, though varying information needs; (2) an emotional …

Listening As Medicine: A Thematic Analysis, Rachel Kishton M.D., Heta Patel, Divya Saini, Jeffrey Millstein M.D., Aaron Levy Ph.D.

Patient Experience Journal

Realizations 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 …

Mystay – Development Of Nurse-Facilitated Condition-Specific Multimedia Resources To Facilitate Patient Participation In Postoperative Care, Jo Mcdonall, Anastasia F. Hutchinson, Natalie Heynesbergh, Bernice Redley, Richard De Steiger, Damien Khaw, Mari Botti

Patient Experience Journal

Improved postoperative outcomes and the global drive toward the provision of patient-centred care underpins efforts to enhance the nature and capacity of patient participation in acute postoperative hospital care. In this paper, we describe the design, framework and processes used to develop a modular, procedure-specific, digital health intervention platform aimed at improving the patient experience and patient participation in care following surgery. The intervention, a multimedia application MyStay, uses bedside delivery of audio-visual and text-based information to engage postoperative patients to better participate in their care. MyStay modules are developed using an iterative, multi-method approach intended to balance procedure-specific best …

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 …

Beyond Service Education: Impacting The Human Experience With Sustained Training Utilizing The Experience Model Of Communication, Jennifer S. Packard, Rebecca A. Brustad, Jane M. Hoplin, Sheila K. Stevens

Patient Experience Journal

Patients scheduling or checking in for medical appointments often share with frontline employees’ details of their stories, including their worries, prior negative experiences, and hopes. These interactions require employees to not only complete their task, but also to be mindfully present, picking up on important social cues and showing appropriate emotional congruence and empathic understanding. Based on a review of recorded patient calls, a gap was identified in the communication skills of desk and scheduling staff at this large academic medical center, and a sustained training program was created to fill this gap. The training is centered on an evolving …

Effect Of Wearing Masks In The Hospital On Patient-Provider Interaction: “They (Providers) Need To Stay Safe For Their Family And Keep Us Safe.”, Jana L. Wardian, Mikayla Peralta, Chad Vokoun, Sarah E. Richards

Patient Experience Journal

Since March 2020 when the Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) pandemic was widespread in the U.S., masks became a primary form of protection for healthcare workers when caring for patients. While wearing masks was not a new phenomenon in the health field, there is little known on how the use of them affects the patient-provider relationship. This study explored the experience of wearing masks on the patient-provider relationship in the hospital. This qualitative study involved interviews with both providers and patients at an academic hospital in the Midwest. At the time of this study, in July 2021, hospital …

Positively Waiting: Technology As The Preferred Distractor In A Pediatric Outpatient Setting, Timothy Ernest, Victoria Maddex, Arnaldo Mejias, Lindy Davidson, Donna Ettel-Gambino

Patient Experience Journal

Visiting any pediatric outpatient clinic as a child may be considered a stressful and anxiety-inducing experience. The literature suggests that positive distractions, such as pet therapy and single-user electronic devices, may aid in reducing anxiety and maximizing patient satisfaction throughout the patient’s experience at a pediatric outpatient clinic. The aim of this pilot quality improvement project was to determine which positive distractions patients experienced and whether single-user electronic loaner devices should be provided to patients at pediatric outpatient facilities. A quantitative causal comparative approach was utilized in identifying patient exposure to key positive distraction techniques that may significantly decrease anxiety. …

Patient And Family Engagement: Bridging Together Interprofessional Practice And Patient- And Family-Centred Care, Yuchen Gao, Sylvia Abonyi, Pamela Downe, Krista Baerg, Heather A. Ward

Patient Experience Journal

Patient and family engagement as part of the health care team is increasingly recommended to meet the objective of providing safer and more coordinated care, as well as enhancing patient satisfaction. This project explores both health care professionals’ and patients and families’ experiences with patient- and family-centred care (PFCC) and interprofessional practice (IPP). Data were collected through individual interviews with 29 health care professionals and 17 patients and families on medicine and pediatrics at a tertiary care teaching hospital. Inductive coding and thematic analysis outcomes are presented using qualitative description. We used communicative action theory to interpret the gap that …

Consumer Representative Experiences Of Partnership With Health Workers In Australia, Coralie R. Wales, Judith A. Lababedi, Alison Coles, Philip Lee, Emma Clarke

Patient Experience Journal

We examine the experiences of Consumer Representatives participating in consumer engagement activities across a public health service in NSW, Australia. A team of Consumer Representatives and staff members use a participatory, constructivist paradigm and a hermeneutic phenomenological approach to analyse ten interviews with Consumer Representatives over three years 2017-2019, and three focus groups in 2020. We explore these experiences and identify the linked contextual factors from their points of view. Consumer Representatives were prepared to invest their time, but they needed respect. “Respect” from a consumer perspective was being meaningfully included, supported and heard, and activities needed to be purposeful …

No Visitors Allowed: How Health Systems Can Better Engage Patients’ Families During A Pandemic, Jennifer Schlimgen, Amy Frye

Patient Experience Journal

The ravages of COVID -19 and the no visitor policies that accompany it have forged a tectonic shift in the patient and family experience. This hit home for me with a recent family member health event and hospitalization, leading me to think “we HAVE to do better!” Why should hospitals and health systems care about family involvement during COVID-19?

Experience Framework

This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework).

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Perceptions Of Care & Patient-Provider Communication By Varying Identity Groups In A Collegiate Health Clinic, Yewande O. Addie, Tatiana Maser, Cecilia Luna, Casey Rayfield, Kelli R. Agrawal

Patient Experience Journal

LGBTQ patients experience discrimination and poor access to quality health care, but there is little inquiry on the experiences of LGBTQ patients in student health clinic. The purpose of this study was to examine the quality of patient-provider communication (PPC) among sexual and gender minority patients, especially those who have intersecting minority identities, in a student healthcare setting. An online survey measured PPC using the Communication Assessment Tool (CAT) and contextual questions regarding identity and perceptions of judgment. Analysis tested intersectional variance in both. A convenience and snowball sample of 102 respondents, 18+, that utilized health services at a public …

Implementing Inter-Professional Patient-Family Centered Plan Of Care Meetings On An Inpatient Hospital Unit, Nicolas Hernandez, Alice Fornari, Sage Rose, Leanne Tortez

Patient Experience Journal

Inpatient plan of care meetings support efforts to encourage collaborative practice and patient-family centered care and result in an effective strategy to enhance communication and patient satisfaction. Clinical team members participated in patient/family centered plan of care meetings at a community hospital in a selected inpatient unit with full time hospitalist physicians. Quantitative data were gathered pre/post implementation from the external Hospital Consumer Assessment of Health Care Providers (HCAHPS) survey. HCAHPS data were collected independently, specifically for questions related to communication between patients, family members/guardians and the medical team and also the effects of care transition. There was a slow …

Beneath The Surface Of Talking About Physicians: A Statistical Model Of Language For Patient Experience Comments, Taylor Turpen, Lea Matthews Md, Senem Guney Phd, Cpxp

Patient Experience Journal

This study applies natural language processing (NLP) techniques to patient experience comments. Our goal was to examine the language describing care experiences with two groups of physicians: those with scores in the top 100 and those with scores in the bottom 100 among all physicians (n=498) who received scores from patient satisfaction surveys. Our analysis showed a statistically significant difference in the language used to describe care experiences with these two distinct groups of physicians. This analysis illustrates how to apply NLP techniques in categorizing and building a statistical model for language use in order to identify meaningful language and …

Socio-Demographic Predictors Associated With Capacity To Engage In Health Care, Ran Sun, Linden Wu, Scott Barnett, Patsy Deyo, Ellen Swartwout

Patient Experience Journal

Patient engagement is essential to improve outcomes and reduce healthcare costs. This study aimed to examine the socio-demographic factors associated with one’s capacity to engage in their health care. An observational, cross-sectional study was performed including patients from five medical/surgical units of four health systems. Patients’ engagement capacity was assessed using the person engagement index (PEI) instrument which contains four subscales: engagement in health care, technology use in health care, proactive approach to health care, and psychosocial support for health care. Separate general linear models were applied for the PEI total score and each of the four subscale scores. Our …

Patient Perception Of Telephone Follow-Up After Resection For Colorectal Cancer: Is It Time For An Alternative To The Out-Patient Clinic?, Marcus Gilmartin, Nicholas Leaver, George Hall, Helena Fawdry, Seung Lee, James Nicholson, Ramya Kalaiselvan, Raj Rajaganeshan

Patient Experience Journal

The economic reality of modern healthcare provides a timely reminder to clinicians of their duty to provide outstanding and cost-effective care. Although multiple guidelines outline investigation, management and surveillance of colorectal cancer, none advocate a particular delivery method. Nurse-led telephone follow-up in multiple specialties has demonstrated equivalent clinical outcomes and patient satisfaction when compared to traditional outpatient department follow-up. This paper aims to compare nurse-led telephone and outpatient follow-up, following surgical resection of colorectal cancer (CRC), focusing on patient perceptions. This cross-sectional study distributed adapted patient satisfaction questionnaire (PS-Q 18) to patients undergoing surveillance following CRC resection via either nurse-led …

Can Doctors Improve The Patient Experience By Rearranging The Furniture And Equipment In Their Office? A Video Recorded Simulation, Moyez Jiwa, Catherine Krejany, Lee Gaedtke, Epi Kanjo, Ruthra Nagendran, Carolyn O'Shea, Iain Greenlees

Patient Experience Journal

The design of this study is a video-recorded simulated consultation. Its aim is to evaluate the effect of changing seating arrangements and stethoscope visibility on patient enablement and non-verbal behaviour. Twelve simulated consultations with six actor-patients and a ‘real’ doctor were video recorded. Either the ‘real’ doctor or actor-patient, blind to the hypothesis sat in large executive office chair during the consult. The patient entered the room afresh for each consult. Consultation quality and outcomes were independently evaluated on three measures: The Patient Enablement Index (PEI), the Leicester Assessment Package (LAP); Non-Verbal Communication (NVC). Both expert reviewers were also blind …

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, …

Wait Time Reality Check: The Convergence Of Process, Perception, And Expectation, Marian Hill, Lorianne Classen, Andrea Romay, Erika Diaz

Patient Experience Journal

There are few experiences as ubiquitous to patients as the experience of waiting. It is an occurrence that transcends diagnosis, is common to all demographics, and is shared across the continuum of care. The experience can be frustrating and full of ambiguity for patients and their families. Wait time and delays can lead to patients sensing a loss of control and magnify the feelings of anxiety they may already be suffering. In an effort to improve patient experience, a framework was developed to examine patient satisfaction as a function of expectations, perceptions, and reality. The process domain focused on the …

Patient Experience Of Taking Adjuvant Endocrine Therapy For Breast Cancer: A Tough Pill To Swallow, Kuang-Yi Wen, Rita Smith, Aruna Padmanabhan, Lori Goldstein

Patient Experience Journal

Adjuvant endocrine therapy (AET) has substantially improved the mortality rate among breast cancer survivors. Despite the proven efficacy, the non-adherence rate to therapy is still high. This study is aimed to examine women’s challenges related to AET adherence and management. Semi-structured interviews were conducted with six Caucasian and six African American breast cancer survivors who were prescribed for AET. The transcripts of audio-taped interviews were qualitatively analyzed. Key themes were: 1) positive beliefs in AET, 2) uncertainty about long-term adherence, 3) experiences with side effects, 4) forgetting and remembering, 5) other concerns and information needs, 6) potential intervention format, and …

Effects Of A Hospital-Wide Physician Communication Skills Training Workshop On Self-Efficacy, Attitudes And Behavior, Minna Saslaw, Dana R. Sirota, Deborah P. Jones, Marcy Rosenbaum, Steven Kaplan

Patient Experience Journal

Hospital systems interested in improving patient experience and physician engagement may look to physician communication skills training (CST) as a means of improving both. This study examines a 7.5-hour, multi-specialty, hospital-wide physician CST workshop in a large academic hospital system and its effects on participants’ self-efficacy, attitudes, and behaviors related to communicating with patients. Data was gathered from October 2014 through June 2016 through a web-based questionnaire sent to participants 6-weeks post-workshop which focused on skills taught in the course, attitudes toward communication training, and provider behaviors when communicating with patients. Along with demographic questions, a ten question retrospective pre-post …

When One Is Sick And Two Need Help: Caregivers’ Perspectives On The Negative Consequences Of Caring, Ilja Ormel, Susan Law, Courtney Abbott, Mark Yaffe, Marc Saint-Cyr, Kerry Kuluski, Debbie Josephson, Ann C. Macaulay

Patient Experience Journal

Informal or family caregivers contribute significantly to individual care, and to the Canadian healthcare system, yet receive limited support from governments, institutions, and healthcare professionals in recognition of their role, or in response to their health and social care needs – often due to the negative consequences of caregiving. Learning about the diversity of others’ experiences can positively influence personal decision-making, reduce feelings of isolation, as well as promote adjustment to a personal situation. For caregivers, however, few resources exist that provide reliable information on others’ experiences. We collected the narratives of caregivers’ experiences of caring for someone with a …

Creating A Common Trajectory: Shared Decision Making And Distributed Cognition In Medical Consultations, Katherine D. Lippa, Valerie L. Shalin

Patient Experience Journal

The growing literature on shared decision making and patient centered care emphasizes the patient’s role in clinical care, but research on clinical reasoning almost exclusively addresses physician cognition. In this article, we suggest clinical cognition is distributed between physicians and patients and assess how distributed clinical cognition functions during interactions between medical professionals and patients with Multiple Sclerosis (MS). A combination of cognitive task analysis and discourse analysis reveals the distribution of clinical reasoning between 24 patients and 3 medical professionals engaged in MS management. Findings suggest that cognition was distributed between patients and physicians in all major tasks except …

The Evaluation Of An Information Booklet In The Use Of Effective Patient Communication In The Setting Of Thoracic Anesthesia, Camille Guillot Miss, Gerry Keenan Dr

Patient Experience Journal

Effective communication is crucial in assuring a good patient experience during an in-hospital stay. In some settings, such as thoracic anaesthesia, patients are given a heavy load of new complex information, in a very limited space of time. Written information, such as patient information booklets, could help as an aid memoir and improve patient’s subjective understanding and preparedness for procedures. This study aims to produce a booklet, specifically targeted at thoracic anaesthesia, and to evaluate it using a linguistics framework in relation to the patient experience and clinical communication. For the study, a booklet was produced in the context of …

Young Adult Perspectives On The Selection Of Pharmaceuticals For Mental Health Treatment, Alaina N. Talboy, Angela M. Aylward, Daniel Lende, Rodney P. Guttmann

Patient Experience Journal

Shared decision making places an emphasis on patient understanding and engagement. However, when it comes to treatment selection, research tends to focus on how doctors select pharmaceutical treatments. The current study is a qualitative assessment of how patients choose among three common treatments that have varying degrees of scientific support and side effects. We used qualitative data from 157 undergraduates (44 males, 113 females; mean age = 21.89 years) that was collected as part of a larger correlational study of depression and critical thinking skills. Qualitative analysis revealed three major themes: shared versus independent decision making, confidence in the research …