Social and Behavioral Sciences Commons^™

“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 …

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 …

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 …

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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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 …

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 …

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, …

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 …

Preference-Sensitive Decisions Of Patients With Metastatic Breast Cancer: The Need For Decision Support, Julie Van De Haterd, Helene Voogdt-Pruis, Ilse Raats, Rianne Van Den Brink, Haske Van Veenendaal

Patient Experience Journal

Because of disease progression and the increasing number of treatment options, patients with metastatic breast cancer face multiple decisions over time. Our aim was to identify the multiple decisions patients with metastatic breast cancer face in order to decide which decision aids will be developed. First, we analyzed the clinical practice guidelines to identify decisions encountered by patients with metastatic breast cancer and healthcare professionals. Furthermore, an online questionnaire for patients, a focus group interview with patients and interviews with healthcare professionals were performed. In addition, we performed a systematic literature research and internet search to identify relevant decision support …

Should I Stay Or Should I Go? Patient Understandings Of And Responses To Source-Isolation Practices, Mary Wyer, Rick Iedema, Christine Jorm, Gary Armstrong, Su-Yin Hor, Claire Hooker, Debra Jackson, Clarissa Hughes, Matthew V.N. O'Sullivan, Gwendolyn L. Gilbert

Patient Experience Journal

Isolation of patients, who are colonised or infected with a multidrug-resistant organism (source-isolation), is a common practice in most acute health-care settings, to prevent transmission to other patients. Efforts to improve the efficacy of source-isolation in hospitals focus on healthcare staff compliance with isolation precautions. In this article we examine patients’ awareness, understandings and observance of source-isolation practices and directives with a view to understanding better the roles patients play or could play in transmitting, or limiting transmission, of multidrug-resistant organisms (MRO). Seventeen source-isolated adult surgical patients and two relatives participated in video-reflexive ethnography and interviews. We learned that, although …

Hearing The Patient Voice: Using Video Intervention/Prevention Assessment To Understand Teens With Cystic Fibrosis, Susan Horky Lscw, Laura E. Sherman Msw, Julie Polvinen, Michael Rich Md

Patient Experience Journal

This qualitative study asked two questions: 1) How do teens with cystic fibrosis (CF) feel about their treatments; and 2) What factors lead teens to adhere, or not adhere, to treatments. To answer these questions we used an innovative approach (Video Intervention/Prevention Assessment or VIA), to learn about the experiences of teens with CF. We loaned video camcorders to teens with CF and asked them to create visual narratives of their lives. Researchers logged and coded videotapes, identifying themes that arose from the material. A primary theme was “Doctors don’t understand.” Participants also highlighted the value of routines and parental …

Enhancing Patient Experience By Training Local Trainers In Fundamental Communication Skills, Calvin L. Chou, Laura Cooley, Ellen Pearlman, Maysel Kemp White

Patient Experience Journal

Medical centers have a vested interest in improving patient experience through enhancing communication skills. The American Academy on Communication in Healthcare has helped institutions across the country establish internal expertise through delivering train-the-trainer programs. The phases of the program include preparing for implementation of the program, having program participants undergo a fundamental communication skills workshop and then understanding the theoretical and practical rationales underlying the workshop, setting up practice sessions for participants to achieve mastery, and ensuring long-term viability of a communication skills improvement initiative. Outcomes for participants include increased self-assessed personal communication skill, optimism about rolling out a communication …