Medicine and Health Sciences Commons^™

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 …

Perceptions Of The Healthcare System Among Stakeholders, Michael D. Markee, Christine Ascencio, Laura Brugger, Renee Jonas, Hisako Matsuo

Patient Experience Journal

The U.S. healthcare system is rife with complexities and is consistently a source of political debate. One’s interaction with the system may directly impact the understanding of the system. The objective of this research is to examine the perceptions of the United States healthcare system from the viewpoint of healthcare providers, insurers, and consumers. Using a grounded theory approach, theoretical sampling was used to explore similarities and differences between the three groups of actors in the healthcare system. Data were collected through interviews with thirty-one participants using a semi-structured interview schedule. Themes of cost, access, and inefficiency emerged from the …

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 …

Patients’ Stories Of Encounters With Doctors: Expectations And Anxieties, Daniella Arieli, Batya Tamir

Patient Experience Journal

The study contributes to the understanding of how patients experience encounters with doctors. The study is based on the gathering and analysis of subjective stories of 'healthy' patients who live in Israel about their encounters with doctors. On the one hand, medical encounters were described as functional ritualistic events, and the doctor was described as an indifferent clerk. On the other hand, and often at the same time, medical encounters were perceived as incredibly meaningful and potentially fateful events, and the doctor as a supreme authority. Four main inter-connected expressions of this were: 1. The encounter as a ritual: A …

Original Parts: Aging And Reckoning With Cystic Fibrosis Related Kidney Disease, Alexandra Ch Nowakowski

Patient Experience Journal

Kidney disease increasingly impacts people with cystic fibrosis (CF) as adult patients continue to survive longer. Yet the literature on CF related kidney disease focuses little on amplifying the voices of people aging with the condition. This article presents perspectives on CF related kidney disease from a medical sociologist who is themselves managing these issues. It (1) gives an overview of relevant literature and trends in epidemiological data on kidney disease and CF, (2) details the author’s own process of adjusting to progressive changes in renal function, and (3) outlines opportunities for clinicians to make a positive impact for patients …

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 …

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 …

Evaluating Variables Of Patient Experience And The Correlation With Design, Dyutima Jha, Amy Keller Frye, Jennifer Schlimgen

Patient Experience Journal

The objective of this paper was to understand the variables of patient experience by analyzing recent and relevant evidence and to identify design solutions within the hospital environment that positively impact those variables. A systematic review of literature published from 2008-present was conducted to identify variables that contribute to patient experience benefits. Identified variables were documented and categorized into a design, organizational, and outcome variable matrix. Interviews were conducted with professionals from healthcare institutions, architecture firms and organizations committed to improving the patient experience. Data from healthcare facilities, with high patient experience scores, was also examined to derive effective design …

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 …

Relationship-Centred Care In Health: A 20-Year Scoping Review, Sophie Soklaridis Phd, Paula Ravitz Md Frcpc, Gili Adler Nevo Md Frcpc, Susan Lieff Md Prcpc

Patient Experience Journal

Relationship-centred care (RCC) is a framework for conceptualizing health care which recognizes that the nature and quality of relationships in health care influence the process and outcomes of health care. Our goal was to undertake a scoping review of the peer-reviewed and grey literature on RCC in health. Using Arksey and O’Malley’s scoping review methodology we identified literature about RCC in teaching, learning and clinical practice. Electronic databases were searched, and targeted searches were also conducted for grey literature to capture unpublished material. Subsequently, data abstraction tools were used with eligible studies for analysis. Sixty-nine publications originated mainly from the …

Can Social Media Reduce Discrimination And Ignorance Towards Patients With Long Term Conditions? A Chronic Kidney Disease Example In The Uk And More Widely, Shahid N. Muhammad, Amy J. Zahra, Howard J. Leicester, Heather Davis, Stephen Davis

Patient Experience Journal

Long Term Conditions (LTCs) are increasing in prevalence and cost in Western healthcare. Patients with such conditions are often classed as “disabled”, because of impacts of self-care on “activities of daily life” or secondary consequences of conditions (impairments) affecting factors such as mobility, concentration and communications. Disability needs are often ignored in the design of services and treatment of individuals. It manifests as services which some find difficult to use and lack of personal respect (discrimination) often based on lack of understanding by the healthcare profession itself (ignorance). This paper explores how Social Media (SM), an example “Assistive Technology” in …

Conceptualising Multiple Conditions In Australia: First Steps To Systemic Change To Meet The Needs Of People With Serious Long-Term Illnesses, Christine F. Walker

Patient Experience Journal

Since the 1970s greater numbers of people are now living with several serious long term illnesses. These include rarer genetic conditions and ‘lifestyle conditions’ as well as those of an idiopathic nature. This article examines the growing need for new terms and concepts that reflect the changes in the lives of people living with long-term serious illnesses.

Members of the Chronic Illness Alliance attended a workshop where they presented their experiences and views of living with multi-morbidities. Consumers were concerned about treatment side-effects, polypharmacy, adverse events and the need for coordinated care. Following this workshop, the Chronic Illness Alliance undertook …

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 …