Medicine and Health Sciences Commons^™

Rules Of Engagement: Strategies Used To Enlist And Retain Underserved Mothers In A Mental Health Intervention, Maureen J. Baker Phd, Rn, Cnl, Beth Perry Black Phd, Rn, Faan, Linda S. Beeber Phd, Pmhcns-Bc, Faan

Patient Experience Journal

Patient engagement has been identified as both a goal and strategy to lower health care costs and improve health care outcomes. However, a lack of consensus and clarity exists as to how the process of patient engagement is implemented in clinical practice. Research addressing the underlying and crucial components of effective patient engagement is limited, leaving a significant gap as to how providers engage patients as active collaborators in their health and health care.

This study provides specific, detailed insight and description into the processes through which advanced practice mental health nurses engaged low-income depressed mothers in a mental health …

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, …

What Older Adults Want From Their Health Care Providers, Hazel Williams-Roberts, Sylvia Abonyi, Julie Kryzanowski

Patient Experience Journal

Changing demographic trends and population needs have increased demand for chronic complex care and contributed to rising health care costs. The study sought to identify unmet health care needs of older adults and opportunities for service improvement in a high need suburban neighborhood of a prairie province. The insights provided by older adults informed the service design for a new model of integrated care in community settings. Narrative inquiry methodology was used to understand care experiences through stories. Stories of older adults’ health care journeys were elicited with semi-structured interviews. A paradigmatic approach to analysis was applied with holistic coding, …

Improving The Patient Experience Through Patient Portals: Insights From Experienced Portal Users, Cynthia J. Sieck, Jennifer L. Hefner, Ann Scheck Mcalearney

Patient Experience Journal

Background: Patient portals have become part of the ecosystem of care as both patients and providers use them for a range of activities both individually and collaboratively. As patients and providers gain greater experience using portals, their use and needs related to portals may evolve. Objective: This study aimed to learn from experienced patient portal users to improve our understanding of their perspectives on portal use for collaboration and engagement as well as explore how using a portal influenced their experiences with primary care providers. Methods: Qualitative study involving 29 semi-structured interviews with family medicine patients from a large Academic …

Patient Partner Compensation In Research And Health Care: The Patient Perspective On Why And How, Dawn P. Richards, Isabel Jordan, Kimberly Strain, Zal Press

Patient Experience Journal

As patient and family engagement activity broadens across the continuum of care and expands around the world, the question of compensation for an increasingly competent advisory community continues to come up. The authors are 4 patients who are highly active in patient and public involvement initiatives internationally. Through our exclusive patient perspective, we provide insight into the reasoning and motivation that many patients are now awakening to as to why lived experience is a value that organizations need to recognize and support in concrete ways. We explore the core principles that an organization needs to consider and adopt when developing …

Elevating The Discourse On Experience In Healthcare’S Uncertain Times, Jason A. Wolf Phd, Cpxp

Patient Experience Journal

Over the last five years, we have been inspired by the breadth of contributions that have helped shape the experience landscape through PXJ as well as the reach that the conversation on patient experience has had. Both the authors and readers of PXJ reinforce that the conversation on patient experience and the human experience in healthcare is not one dominated by national intent or even policy. While for some motivation has come in some part from mandated action, for most tackling this idea in healthcare is it grounded in two core realities. The first, in healthcare at its core we …

Call For Submissions - Special Issue July 2019: The Role Of Technology And Innovation In Patient Experience, Patient Experience Journal

Patient Experience Journal

Patient Experience Journal (PXJ) is excited to announce the call for submissions for its July 2019 special issue on the topic of the role of technology in patient & family experience. A focus on technology and innovation will be essential in healthcare experience, requiring new ways of thinking and doing and the technologies and tools to ensure efficiencies, expand capacities and extend boundaries of care.

This special issue is open to all authors conducting cutting-edge research, implementing innovative practices or with powerful experiences to share around efforts in either creating or implementing technology focused on positively impacting the patient experience …

Family Experience Tracers: Patient Family Advisor Led Interviews Generating Detailed Qualitative Feedback To Influence Performance Improvement, Kathryn Taff, Sheryl Chadwick, Deejo Miller

Patient Experience Journal

Patient Family Advisors (PFAs) are integral partners in quality improvement processes at Children’s Mercy Kansas City. Mimicking Joint Commission patient tracers, the Family Experience Tracer program was created to gather perspectives from end users of care and provide valuable insights regarding the patient experience. The Patient and Family Engagement team collaborates with departmental and organizational leadership to define the scope of the tracer project and determine meaningful topics to elicit feedback from patients and families. Tracers are conducted across the continuum of care and are led by a Patient Family Advisor to establish an immediate peer relationship. Patients and families …

Can An Interactive Application Be Used To Collect Meaningful Feedback From Paediatric Patients And Their Parents In A Hospital Setting?, Janelle O'Neill, Graham R. Reeks, Lauren Kearney

Patient Experience Journal

The objective of this study was to determine the acceptability of using an interactive application (Fabio the Frog) to understand the experiences and perspectives of children and parents/carers regarding their health care encounter for the purpose of quality improvement and consumer feedback. Children’s perspectives of their healthcare were collected via the interactive application through the use of a validated survey, the Children’s Perceptions of Healthcare Survey (CPHS). The acceptability of eliciting views from children and parents via an interactive application platform was collected using an additional survey designed for this purpose. Data were collected in two phases. Overall, healthcare experiences …

What Constitutes The Patient Experience Of Children? Findings From The Photo Elicitation And The Video Diary Study, Nina Karisalmi, Hanna Stenhammar, Johanna Kaipio

Patient Experience Journal

Patient experience (PX) is getting attention among researchers and healthcare service providers, but little is known about the experiences of child patients and how to explore those. This paper reports findings from a study in which two participatory research methods, photo elicitation and video diary, were applied to investigate the elements of children’s PX in the context of children’s hospital. The aim was to find out what elements constitute the PX of children aged 7–16 years. The research data were gathered in 2016–2017. Twenty-two child patients participated in the study: eight children aged between 7 and 10 in the photo …

Breaking Bad News And The Importance Of Compassionate Palliative Care Of The Infant, William S. Sessions Ii, Sean Y. Kow, Elizabeth Waldrop, Kayle Stevenson, Ayo Olanrewaju, Thu Tran, Mubariz Naqvi

Patient Experience Journal

Bad news to parents regarding their infant is information that negatively impacts the parent’s feelings and view of the present and/or future. It is implemented in situations with feelings of no hope or those that induce a threat to a parent’s mental and physical well-being. The term is difficult to define as it is based on parent’s subjective feelings. However, it is important to be aware of the impact of bad news as it can cause severe anguish and stress on the parent’s emotional stability. The style of delivering bad news has a significant impact on the physician/parent relationship and …

Life With My Baby In A Neonatal Intensive Care Unit: Embracing The Family Integrated Care Model, Yasmin Lalani

Patient Experience Journal

This paper is a personal narrative that describes the components of the Family Integrated Care Model in a neonatal intensive care unit in Canada. I begin by introducing the reader with a brief story of how my son came to be admitted into a NICU. Next, I discuss three aspects of the Family Integrated Care Model that I found to be most striking: medical rounds, “do-ups” and skin-to-skin contact. I also discuss how my immersion in this healthcare setting for three months was a form of autoethnographic fieldwork, as I experienced the NICU both as a parent and a health …

What Medicine Can Learn From Pediatrics: A Mother's Perspective, Nancy Michaels

Patient Experience Journal

As a mother of a young adult child with Aspergers syndrome, as well as being a long-term patient myself (liver transplant in 2005), I have extensive experience in both camps. Recently my 20-year old son was admitted to a children’s hospital for a twisted colon that had to be surgically reduced. As the parent of a child with special needs and related physical health-related issues connected to him being on the autism spectrum, I was naturally very concerned about him entering a hospital (perhaps PTSD based on my own experience at moments). Surprising to me, the experience was a very …

Partners For Excellence: Committed To Meaningful Partnerships With Patients And Families In Pediatrics, Rachel Biblow, Msw, Sara Toomey Md, Mphil, Mph, Msc

Patient Experience Journal

Although the landscape in pediatrics continues to shift and change, one of the keys to our continued success remains the same… it’s about partnership. It’s clear the element of partnership is well woven through our organizations as illustrated by many of us having patient and family advisory councils, family consultants, and family partners. While this foundation is strong and essential, we must do more to truly listen, recognize the value of patient and family involvement, act upon the information shared, openly discuss issues, and strive for better together. True partnership with patients and families requires us to shift the paradigm …

Lessons For Patient Experience From The Voices Of Pediatrics And Children’S Hospitals, Jason A. Wolf Phd, Cpxp

Patient Experience Journal

This special issue on patient & family experience in children’s hospitals and pediatric care underlines pediatrics’ position as a leader in the experience journey. In pediatrics and children’s hospitals significant efforts are made to the ensure the environment is welcoming and comfortable, there is a commitment to communicating to patients – the children that are cared for – in a way they can understand, and there is a clear intention of engaging family members as an integral part of the care experience. In acknowledging that this is a special issue on pediatrics, we would miss a significant opportunity if we …

What Are The Most Important Dimensions Of Quality For Addiction And Mental Health Services From The Perspective Of Its Users?, Priscilla Liu, Shawn Currie, Jassandre Adamyk-Simpson

Patient Experience Journal

There is a need to better engage service users in improving their experience with the care received in Addiction and Mental Health (A&MH). Dimensions of patient experience that are most salient to A&MH service users still remain to be properly defined from the patient perspective. This research focuses on identifying key domains of service experience important to patients of Addiction and Mental Health using patient focus groups. In addition, through a patient and family advisory committee, patients were also engaged as co-partners of the research team. The patient advisors had a major role in overseeing the research project, assisting with …

Nursing Transfer Of Accountability At The Bedside: Partnering With Patients To Pilot A New Initiative In Ontario Community Hospitals, Kristina Ba Miller, Aden Hamza, Kateryna Metersky, Dianne M. Gaffney

Patient Experience Journal

The transfer of accountability (TOA) for a patient from one nurse to another at change of shift is an important opportunity to exchange essential patient care information, as well as to enhance the safety and quality of patient care. This study was undertaken to explore nurses’, patients’ and family members’ perceptions associated with the implementation of bedside nurse to nurse TOA. Focus groups were conducted pre-implementation (two with nurses and two with patients and family members) and post-implementation (six with nurses and two with patients and family members). The focus groups were audio-recorded, transcribed and analysed using directed content analysis. …

Family-Centered Caregiving From Hospital To Home: Coping With Trauma And Building Capacity With The Hope For Families Model, Anna Newcomb, L Gordon Moore, Holly C. Matto

Patient Experience Journal

Informal caregivers and families play a significant role in the recovery process of trauma survivors. However, the needs and outcomes of orthopedic caregiving family members in the months following traumatic injury have received almost no attention in the literature. Our study sought to understand the factors impacting orthopedic trauma families’ experience and their ability to cope and provide care post-acute hospitalization. Based on these findings, we designed a hospital-based program to enhance family coping and adjustment post-discharge. Caregivers (N=12) of patients with orthopedic trauma injury engaged in three in-depth semi-structured face-to-face interviews to identify their most salient concerns. Once home, …

How Patients View Their Contribution As Partners In The Enhancement Of Patient Safety In Clinical Care, Marie-Pascale Pomey, Nathalie Clavel, Ursulla Aho-Glele, Noemie Ferré, Paloma Fernandez-Mcauley

Patient Experience Journal

Despite the call from the World Health Organization for more active involvement from patients in the prevention of health care-related risks, there is still insufficient evidence about how patients can be more proactive in the safety of their own care. This study helps understand the perspective of patients as partners regarding their roles, as well as their relatively untapped potential in detecting and limiting adverse events (AEs) for patient safety. 17 patients-as-partners were interviewed on five themes: 1) Behavior of patients/relatives for avoiding AEs; 2) Competencies sought in patients/relatives to play an active role in patient safety; 3) Factors limiting …

Barriers And Facilitators To Family Participation In The Care Of Their Hospitalized Loved Ones, Lynda Bélanger, Marie Desmartis, Martin Coulombe

Patient Experience Journal

This study’s objective was to better understand family members’ experiences in order to identify how healthcare organizations can facilitate their participation in the care of a hospitalized loved one. Eighteen individuals at the bedside of a hospitalized loved one were interviewed individually. Roles at the bedside and factors that facilitated their participation or represented barriers were examined. A qualitative analysis using a mixed inductive/deductive approach was performed. Reassurance and emotional support, as well as sharing information with the healthcare team emerged as main roles. Quality and timeliness of the information received about the patient’s condition, prognosis and changes in medical …

A Framework For Conceptualizing How Narratives From Health-Care Consumers Might Improve Or Impede The Use Of Information About Provider Quality, Melissa L. Finucane, Steven C. Martino, Andrew M. Parker, Mark Schlesinger, Rachel Grob, Jennifer L. Cerully, Lise Rybowski, Dale Shaller

Patient Experience Journal

Consumers choosing a health-care provider have access to diverse information including narratives by patients about their prior experiences. However, little research has examined how narratives might improve or impede the use of information about the quality of providers’ performance. This paper describes a conceptual framework for examining mechanisms by which narrative information might influence consumer judgments and decisions about providers. We conducted a conceptual review of risk communication and behavioral decision research. We synthesized the literature to form the foundation of a conceptual framework for assessing how narrative information about provider quality impacts consumer decisions about providers. We identified four …

The Sherpa Meets Maslow: Medicine And The Hierarchy Of Needs, Rana Lee Adawi Awdish Md Fccp

Patient Experience Journal

A critical care physician returning to medicine after her own critical illness experiences a crisis of orientation. She finds she can no longer serve as the Voice of Medicine. She replaces the former construct with a more humble model, in which the physician serves as an intermediary. She equates this new role to that of the Sherpas of Nepal. Maslow’s hierarchy of needs forms the mountain, as she reimagines her role in her patients’ lives.

The Consumer Has Spoken: Patient Experience Is Now Healthcare’S Core Differentiator, Jason A. Wolf Phd

Patient Experience Journal

In just a few days we will celebrate Patient Experience Journal’s (PXJ) 4^th anniversary since our inaugural publication. In these 4 short and quick years we have seen 163 articles published in our first four volumes that have stirred a significant focus on building the evidence base in patient experience. Not only has PXJ served as the central clearing house for thoughtful research, measurable cases, and insightful narratives, but it also has reinforced the breadth and depth of what patient experience truly encompasses. This integrated view was reinforced by the very voices of healthcare’s consumers in The Beryl Institute’s …