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 …

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 …

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 …