Medicine and Health Sciences Commons^™

Exploring The Experience Of Healthcare-Related Epistemic Injustice Among People With Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, Joanne Hunt, Jessica Runacres, Daniel Herron, David Sheffield

The Qualitative Report

Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a chronic, disabling yet clinically “contested” condition, previously theorised through a lens of epistemic injustice. Phenomena conceptually close to epistemic injustice, including stigma, are known to have deleterious consequences on a person’s health and life-world. Yet, no known primary studies have explored how people with ME/CFS experience healthcare through a lens of epistemic injustice, whilst a dearth of research explicitly exploring healthcare-related injustice from a patient perspective has been noted. This qualitative study seeks to address this gap. Semi-structured interviews and interpretative phenomenological analysis (IPA) were used to explore the experiences of …

Perspectives Of Middle Eastern Immigrant Parents Regarding Accessing Healthcare Services For Children During The Covid-19 Pandemic In London, Ontario, Sarvenaz Mehrabi

Electronic Thesis and Dissertation Repository

Background: During the COVID-19 pandemic, immigrants have been disproportionally affected and faced difficulties in accessing healthcare services. While it has been reported that the rate of pediatric healthcare utilization decreased during the COVID-19 pandemic, the reasons behind this decline are unclear. It has been suggested that immigrant children might be affected by the COVID-19 pandemic restrictions regarding accessing healthcare services. This study aims to understand the Middle Eastern immigrant parents’ perspectives regarding their access to healthcare services for their children in the London, Ontario, area during the COVID-19 pandemic.

Methods: This qualitative study was conducted with an interpretive description methodology …

Support For Me Needs Assessment Summary., Mary Lindsey Smith Phd, Katie Rosingana Ba, Evelyn Ali Bs, Karen Pearson Mlis, Ma, Mark Richards Bs, Katharine Knight Mph, Tyler Egeland Ba, Olivia Dooley Mpa

Substance Use Research & Evaluation

Maine Department of Health and Human Services contracted with the Catherine Cutler Institute at the University of Southern Maine to conduct a baseline needs assessment. The overall goal was to better understand the current capacity to address substance use in Maine; find barriers to receiving and utilizing SUD treatment and recovery services; and identify any gaps in SUD-related services in the state. The Cutler team conducted interviews, surveys, community listening sessions and focus groups with healthcare key informants (leadership from health systems, residential care, recovery housing, behavioral health agencies), providers (medical, behavioral health, first responders, residential treatment, law enforcement, opioid …

Supporting Academic Primary Care Teams Serving Refugees: A Qualitative Study, Gabrielle Waclawik Md Mph, Fabiana Kotovicz, Devin Walsh-Felz Md Mph, Savitri Tsering Mssw, Nancy Pandhi Md Mph Phd

Journal of Refugee & Global Health

Introduction: Primary care providers continue to experience significant challenges when caring for refugee patients, yet they are often refugees’ initial point of contact with the U.S. health care system. The purpose of this qualitative study is to expand our understanding of the experiences of academic primary care team members during clinical encounters with refugee patients.

Methods: This multi-perspective, qualitative study included physicians (faculty and residents), nurse practitioners, pharmacists, nurses, and medical assistants (n=10), who have been working with refugee patients for at least one year at two family medicine residency clinics and/or a community health center. Semi-structured in-person interviews were …

Feasibility And Validity Of Asking Patients To Define Individual Levels Of Meaningful Change On Patient-Reported Outcomes, Salene M.W. Jones, Yuxian Du, Ari Bell-Brown, Kaylin Bolt, Joseph M. Unger

Journal of Patient-Centered Research and Reviews

Purpose: Patient-reported outcomes (PROs) are frequently used in clinical care to monitor treatment response. However, most guidelines on PRO use treat all patients the same. This study tested the feasibility and validity of a method for determining individually meaningful change in PRO measures.

Methods: Participants (n = 398) completed 12 pain and distress questions to define individually meaningful change. This mixed-methods study used both quantitative and qualitative analyses, including descriptive statistics, inferential statistics, and content analysis.

Results: Two-thirds (67%) of the sample reported at least one medical condition, including depression and back pain. Most participants (70%–90%) were able to answer …

“Can I Still Get A Tattoo?” Patients’ Experiences Across The Clinical Trajectory For Metastatic Melanoma: A Dynamic Narrative Model Of Patient Journey, Klay Lamprell, Melvin Chin, Jeffrey Braithwaite

Patient Experience Journal

Advanced and metastatic cancer has a complex diagnostic and management profile that places a heavy long-term burden on patients and healthcare systems. Little attention has been given to patients’ experiences across their entire clinical journey. Using a qualitative, longitudinal methodology over a ten-month period, we examined the symptom-to-outcome trajectories of seven people attending a medical oncology clinic at a large, public tertiary referral center in Sydney, Australia. Rather than care being experienced as a largely linear progression through diagnosis, treatment and onto surveillance in which life may return to ‘normal’, participants are embedded in a cyclical clinical pathway. Recurrence or …

'No Pink Ribbons': How Women's Lived Experiences With Breast Atypia Inform Decisions Involving Risk-Reducing Medications, Sarah L. Goff, Reva Kleppel, Grace Makari-Judson

Journal of Patient-Centered Research and Reviews

Purpose: Atypical hyperplasia (AH) is associated with a nearly 4-fold elevation of lifetime risk for breast cancer, and lobular carcinoma in situ (LCIS) is associated with a 7- to 8-fold risk. Women with AH/LCIS make numerous decisions in the course of treatment, including whether to take a risk-reducing medication, an option relatively few women pursue. We explored women’s decision-making processes through patient narratives in an effort to inform decision supports for AH/LCIS.

Methods: We conducted in-depth interviews with 20 English-speaking women with AH/LCIS and no subsequent diagnosis of invasive breast cancer who had enrolled in the Rays of Hope Center …

In Case Of Emergency: Local Medical Services And Emergency Air Transportation In Southeast Alaska, Kourtney B. Johnson

Graduate Student Theses, Dissertations, & Professional Papers

Alaska, often referred to as “The Last Frontier”, is a vast, geographically diverse and sparsely settled landscape. Although many popular reality shows tend to exaggerate and dramatize life in Alaska, they do point to an important fact: when an emergency occurs, or someone experiences serious health complications, immediate access to sufficient medical services may not be available. Much of the state’s population faces barriers to accessing needed medical care due to large distances between communities and limited road networks due to coastal locations or challenging terrain.

Using Penchansky and Thomas’s five components of Access Theory (1981), this thesis explores factors …

Rural Opioid Prevention And Treatment Strategies: The Experience In Four States [Working Paper], John A. Gale Ms, Anush Hansen Ms,Ma, Martha Elbaum Williamson Mpa

Mental Health / Substance Use Disorders

Although opioid use rates are comparable in rural and urban counties, rural opioid users tend to be younger, unmarried, have lower incomes, and are more likely to lack health insurance, all vulnerabilities that may negatively impact their ability to seek treatment and recover. Additionally, the rural health care system is characterized by numerous resource, workforce, access, and geographic challenges that complicate the delivery of specialized care for OUDs in rural communities. The nature and scope of the opioid crisis vary across rural communities and require multifaceted, community-based strategies to address the problem. Based on interviews with key stakeholders in Indiana, …

Rural Opioid Prevention And Treatment Strategies: The Experience In Four States [Policy Brief], John A. Gale Ms, Anush Yousefian Hansen Ms,Ma, Martha Elbaum Williamson Mpa

Mental Health / Substance Use Disorders

Little is known about what states with large rural populations are doing to combat opioid use disorders (OUD) in rural communities. This qualitative study identified rural challenges to the provision of OUD prevention, treatment, and recovery services and explored promising strategies to tackle the opioid crisis in rural communities.

Understanding Over-The-Counter Medication Use And Decision-Making Among Community-Dwelling Us Older Adults: A Mixed-Methods Approach, Yoshita Paliwal

Theses and Dissertations

Introduction

Older adults are regular consumers of over-the-counter (OTC) medications. OTC medications are generally considered safe, and convenient to use without requiring a prescription. However, the safety of an OTC medication and the final health outcome depends in part upon consumers’ perceptions, beliefs, and their decision-making about OTC medication use. The main objectives of this study were: 1) to examine the prevalence and characteristics of OTC medication use among community-dwelling US older adults (65 years and older), 2) to explore older adults’ knowledge, attitudes, beliefs and experiences about OTC medications, and 3) to elicit the OTC medication decision-making process in …

‘Because I Don’T Know’: Uncertainty And Ambiguity In Closed-Ended Reports Of Perceived Discrimination In Us Health Care, Chih-Yuan Lee, Amy Irby-Shasanmi

Department of Public Health Scholarship and Creative Works

Objective

Surveys often ask respondents to assess discrimination in health care. Yet, patients’ responses to one type of widely used measure of discrimination (single-item, personally mediated) tend to reveal prevalence rates lower than observational studies would suggest. This study examines the meaning behind respondents’ closed-ended self-reports on this specific type of measure, paying special attention to the frameworks and references used within the medical setting.

Design

Twenty-nine respondents participated in this study. They were asked the widely used question: ‘Within the past 12 months when seeking health care do you feel your experiences were worse than, the same as, or …

Meaningful And Effective Patient Engagement: What Matters Most To Stakeholders, Mandy Bellows, Katharina Kovacs Burns, Karen Jackson, Brae Surgeoner, Jennifer Gallivan

Patient Experience Journal

To determine what resources, preparation, and support are needed for patients, providers, and leaders to meaningfully and appropriately engage in patient-centred health system redesign, researchers sought to learn what really matters to these three stakeholder groups. A qualitative descriptive design was selected using purposive participant sampling, focusing on ‘who’, ‘what’ and ‘why’ questions pertaining to stakeholder perceptions about patient engagement in their specific context as patients, providers or leaders. Four project groups were selected; each group was responsible for a strategic initiative within Alberta Health Services and represented one of three different levels of the healthcare system (i.e. program, site …

What Is Comprehensive Sexuality Education Really All About? Perceptions Of Students Enrolled In An Undergraduate Human Sexuality Course, Eva Goldfarb

Department of Public Health Scholarship and Creative Works

The purpose of this study was to use qualitative evaluation techniques to explore the perceptions of students enrolled in undergraduate human sexuality classes regarding their expectations for the course as well as outcomes. One hundred forty-eight students were surveyed at the beginning and again at the end of the semester-long course. While pregnancy and STI prevention were considered important components of their courses, other outcomes associated with positive, healthy sexuality were given greater emphasis. Results suggest that while primary and secondary level sexuality education have been increasingly focused on abstinence-only education with a focus on pregnancy and STI reduction, this …