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The Beryl Institute

Quality of life

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Full-Text Articles in Medicine and Health Sciences

“Not Your Father’S Heart”: How Healthcare Discrimination For Neurodivergent Patients Taught Me About The Human Experience, Cate Murphy Apr 2024

“Not Your Father’S Heart”: How Healthcare Discrimination For Neurodivergent Patients Taught Me About The Human Experience, Cate Murphy

Patient Experience Journal

It is easy to assume all patients who come into a hospital for acute crisis care have a clear understanding of how their experience will be facilitated. When a patient is neurodivergent, they cannot always agree to needed intervention. This is exacerbated by the “poor timing” of questions portrayed to impact the critical care received, sometimes irreparably. This is my story of watching my young, active partner suffer two massive heart attacks and refuse intervention because he was ashamed to admit he had not seen a doctor in over thirty years. Due to his neurodivergence, he could not process questions …


Understanding Patient Experiences Before And During The Covid-19 Pandemic: A Quasi-Experimental Comparison Of In-Person And Virtual Cancer Care, Linda Watson, Claire Link, Siwei Qi, Eclair Photitai, Lindsi Chmielewski, Diane Fode, Andrea Deiure Apr 2022

Understanding Patient Experiences Before And During The Covid-19 Pandemic: A Quasi-Experimental Comparison Of In-Person And Virtual Cancer Care, Linda Watson, Claire Link, Siwei Qi, Eclair Photitai, Lindsi Chmielewski, Diane Fode, Andrea Deiure

Patient Experience Journal

The COVID-19 pandemic prompted the immediate widespread implementation of virtual care appointments in Cancer Care Alberta (CCA). This study aimed to compare patient experiences and satisfaction with in-person care provided prior to the pandemic and virtual care provided after the COVID-19 outbreak. Surveys were conducted to compare patient satisfaction, using the Your Voice Matters (YVM) experience survey, between patients in the pre-pandemic in-person (baseline) and post-outbreak (virtual) cohorts. Generalized Linear Models (GLMs) with an ordinal logistic link were used, adjusting for self-reported health status and other covariates, to investigate the association between cohort type and patient satisfaction. Despite having higher …


Caring For Our Caregivers In Body, Mind And Spirit During The Covid-19 Pandemic, Rick Evans, Philip J. Wilner, Kristen Spillane Aug 2020

Caring For Our Caregivers In Body, Mind And Spirit During The Covid-19 Pandemic, Rick Evans, Philip J. Wilner, Kristen Spillane

Patient Experience Journal

New York City became the epicenter of the coronavirus pandemic in March 2020. The surge of critically ill patients combined with widespread social distancing measures created extraordinary challenges for healthcare workers. Many frontline workers experienced significant physical, psychological, and emotional distress. They faced demanding patient care responsibilities while managing personal obligations and health concerns.

During the COVID-19 pandemic, it was imperative that NewYork-Presbyterian care for its workforce’s physical, psychological and emotional needs, not only because of our commitment to our colleagues as people, but also because of our obligation to continue to deliver high quality care and experience to the …


Awakening From A Medical Mystery: One Patient’S Experience Of Being Undiagnosed, Dwane Unruh Nov 2019

Awakening From A Medical Mystery: One Patient’S Experience Of Being Undiagnosed, Dwane Unruh

Patient Experience Journal

This personal narrative pleads for a supportive and comprehensive system or sub-system similar to that which exists for cancer patients, to deal with undiagnosed illnesses. By describing the torment of living with a debilitating illness that medicine could not easily recognize, then by contrasting this experience with my wife’s experience of the cancer care system, and by referring along the way to lessons learned many years ago from reading the works of the inciteful neurologist, Dr. Oliver Sacks, I hope to inspire the medical system to develop a separate, supportive and comprehensive system to deal with the undiagnosed. As it …


Developing The First Pan-Canadian Acute Care Patient Experiences Survey, Salima Hadibhai, Jeanie Lacroix, Kira Leeb Nov 2018

Developing The First Pan-Canadian Acute Care Patient Experiences Survey, Salima Hadibhai, Jeanie Lacroix, Kira Leeb

Patient Experience Journal

The Canadian Institute for Health Information (CIHI) in partnership with stakeholders sought to develop the first pan-Canadian patient experiences survey for inpatient care (CPES-IC). The goal was to provide a national survey standard for comparative patient experience measures to facilitate benchmarking for quality improvement. A cognitive and pilot testing study design was performed using survey data from adult inpatient care settings. Participants included the inter-jurisdictional members (IJ), survey subject matter experts and CIHI (The Group). Cognitive testing of the survey took place in three Canadian jurisdictions in English and French languages. Thirty-nine individuals participated in one-on-one interviews. During pilot testing, …


“We Were Learning Together And It Felt Good That Way.” A Case Study Of A Participatory Group Music Program For Cancer Patients, Laurie Sadowski Nov 2017

“We Were Learning Together And It Felt Good That Way.” A Case Study Of A Participatory Group Music Program For Cancer Patients, Laurie Sadowski

Patient Experience Journal

Though there are similarities to music therapy, the field of community music in healthcare, while in its infancy, is steadily growing. This case study explored how semi-formal, active music-making can play a role in illness and recovery and provide patients with a sense of voice, connection, and community, and the efficacy of community music programming in a hospital. Six participants began and three participants completed a 6-week music class learning the ukulele. Interpretative Phenomenological Analysis (IPA) was used as a method for data analysis from semi-structured pre-questionnaires, transcribed classes, transcribed post-interviews, and weekly questionnaires from both the participants and the …