PaCER - Patient and Community Engagement Research
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The Patient and Community Engagement Research (PaCER) program, as part of the O’Brien Institute for Public Health at the University of Calgary and in partnership with Alberta Health Services through the Strategic Clinical Networks™, is committed to transforming the role of patients in health care and health culture through engagement research.
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Browsing PaCER - Patient and Community Engagement Research by Department "O’Brien Institute for Public Health"
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Item Open Access ERAS From the Patient Perspective(2016-10-08) Gill, Marlyn; Zelinsky, Sandra; Gillis, Chelsia; Nguyen, SusanItem Open Access Experiences of Heart Related Symptoms Among Younger Women(2016) Choudhury, Romita; Robertshaw, Sandra; Wheeler, Laura; Pearson, WinnieItem Open Access I Promised We’d Get Help: The Parent’s Journey – Experiences of Parents and Family of Youth Visiting the Emergency Department with Mental Health Concerns(2018) Kockzur, Susanna; Halton, Esther; Pintson, KarinaItem Open Access I was Curious, I Wanted To Confirm What I Thought I Knew and I Wanted to Change(2014-12) Sim, NataliaItem Open Access Issues Faced by First Nations, Metis and Inuit Rheumatoid Arthritis Patients in Accessing and Navigating the Health Care System(2015-11-20) Miller, Jean; Teare, SylviaItem Open Access Living With Inflammatory Bowel Disease(2016-02) Fairs, Clair; Lengkeek, Shannon; Van Engelen, Amy; McKinney, LaurieItem Open Access Losing Our Stories: Early Experiences of Individuals Facing Mental Illness(2015-03-09) Koczkur, Susanna; Halton, Esther; Sarsfield, Barb; Adams, Susan; Hellard, OaitseItem Open Access Meaningful Results from Meaningful Engagement: Enabling Patient and Family Participation in the AHS Seniors Health SCN(2015-04-05) Miller, Jean; Teare, SylviaItem Open Access Oh! Canada: South East Asian Immigrant Experience of Osteoarthritis (OA) Surgery(2013-08) Kalia, Rashika; Khan, Rooh-Afza; Sheridan, Mary; Marlett, Nancy; Shklarov, Svetlana; Gill, MarlynItem Open Access Optimizing Centralized Intake for Rheumatoid Arthritis: a PaCER Study(2015-03-21) Miller, Jean; Teare, SylviaItem Open Access Patient and Family Experiences When Moving from the Intensive Care Unit (ICU) to a Hospital Ward(2015-01-30) Boulton, Debbie; Oswell, Donna; Oxland, PeterItem Open Access Patient and Family Experiences: The First Days After Stroke(2016-02-04) Murphy, Brendan; Ryan, Laurel; Sharman, DonnaItem Open Access Patient Engagement in Breast Health Education Initiative(2017-10-31) Choudhury, Romita; Wheeler, LauraItem Open Access Patient Engagement to Identify Priorities for Shared Decision-Making Tools in Cardiac Care(2016-02-29) Miller, Jean; Teare, SylviaItem Open Access Patient Experience of Waiting for Elective Surgery(2017-07-14) Gill, Marlyn; Nguyen, Susan; Sarsfield, Barb; Shklarov, SvetlanaItem Open Access Patient Perspectives and Expectations About Primary Care by Occasional Users, Seniors and Those With Complex and Chronic Care Needs(2017-03-04) Marlett, Nancy; Gill, Marlyn; Kozcur, Susanna; Choudhury, RomitaItem Open Access Report on the Analysis of The PaCER Patient Interviews from KOASK Phase 2(2019-01-16) Miller, Jean; Teare, SylviaItem Open Access Report on the PaCER Component of the AS MOC Study(2014-05-25) Miller, Jean; Teare, SylviaItem Open Access Report on the PaCER Component of the Knee Osteoarthritis and Self –Management Knowledge(2017-06-14) Miller, Jean; Teare, SylviaItem Open Access Stillbirth, still life: A qualitative patient-led study on parents’ unsilenced stories of stillbirth(2017) Roland, Brenda; Wheatley, Venesa; Jones, Ashley; Gillis, ChelsiaObjective: Explore parents’ experiences of stillbirth using a patient-led qualitative approach. Methods: Parents who had experienced stillbirth in the previous 5 years were recruited through posters and snowball sampling, each participating in one or more data collection event. We conducted a co-design focus group to set the direction of our research, narrative interviews, and a reflect focus group to engage parents in finalizing the analysis and findings. Data were analysed iteratively using a participatory grounded theory approach. Results: Parents’ (n=11) experiences tended to be expressed in the form of two narratives: clinical and personal; the historical silent discourse permeated both narratives. The clinical experience, Abandoned in silence, was sub-divided into three categories: 1) Lead me through the decision with one sub-category: Recognize that I am having a birth and death experience; 2) I need specialized care now; and 3) I need specialized care later. The personal experience, Shrouded in silence, was sub-divided into three categories: 1) I survived the space between; 2) I am learning to forge a new path; and 3) My daughter’s name is Charlotte. Stillbirth is a story of death, but it is also a story of life. In stillbirth, parents require the space to experience both the birth and death elements of the story; yet, one or both elements are often silenced. Stillbirth, still Life was the core concept that emerged from parents’ stories of their stillborn babies. Conclusion: Parents’ narratives are driven by the need to honour their babies’ lives. They are learning to be unsilenced.