Narratives of resilience in aging Soviet Jewish child survivors of the holocaust

Bibliography: p. 215-23

Grounding the Translation: Intertwining analysis and translation in cross-language grounded theory research

Grounded theory research in cross-language, cross-cultural context is associated with the challenges of linguistic sensitivity of conceptualization. The author, a bilingual researcher, offers reflection on her experience of doing grounded theory research, assuming a dual role of a theorist and a translator. The reflection is based on self-observations. Grounding the translation is shown to be acheived through the strategy of intertwining the activities of translation and conceptual analysis, performed by one person. The two activities are inseparable in time and take place along with constant comparison across language boundaries. Intertwining requires that theoretical sensitivity of the researcher be enriched with the sensitivity to linguistic and cultural meanings. Intertwining, through revealing differences between linguistic meanings or language structures, facilitates the emergence of concepts and theoretical categories from the very act of translation. Combining the functions of translation and analysis and using the strategy of intertwining worked effectively for this researcher

Patient Experience of Waiting for Elective Surgery

Alberta Health Services Surgical Strategic Clinical Networ

Oh! Canada: South East Asian Immigrant Experience of Osteoarthritis (OA) Surgery

Other Supporting Agencies: Alberta Health ServicesBone & Joint Strategic Clinical Network, Community Rehabilitation and Disability Studies, Community Health Sciences Department, Faculty of Medicine, The Institute for Public Health, Vecova Centre for Disability Services and Research, Arthritis Society – Alberta and Northwest Territories, University of Calgary PressCanadian Foundation for Healthcare Improvement (CFHI

Patient and public engagement in health-related quality of life and patient-reported outcomes research : what is important and why should we care? Findings from the first ISOQOL patient engagement symposium.

Purpose Recent years have witnessed growing international interest in the active involvement, or engagement [patient engagement (PE)], of patients and the public in health services research. However, there is limited evidence of the extent or impact of PE in health-related quality of life (HRQL) and patient-reported outcomes (PRO) research. Therefore, in October 2013, the International Society for Quality of Life research (ISOQOL) hosted its first symposium, which sought to explore the potential for PE in this field. Methods A ‘World Café’ format encouraged the exploration of three ‘menu’ questions’ in small groups at round tables. Views, opinions and concerns were captured. A thematic analysis was undertaken, and key themes listed. Results Sixty conference attendees participated in the ‘PE Café’, which lasted for 90 min. A diversity of experience was communicated, with most participants positive about the potential for PE. Similarities and differences in approaches, barriers and solutions were identified. However, a key message focused on the uncertainty about how to effectively engage with patients throughout the research process. Moreover, the lack of evidence-base demonstrating the impact of PE was a significant concern. No patient partners participated in the meeting. Conclusion This study describes the first international exploration of PE in HRQL and PRO research. Discussions highlighted that, in the absence of good practice guidelines, a framework or toolkit of how to embed PE within HRQL and PRO research is required. Moreover, this framework should support the rigorous evaluation of PE impact. ISOQOL should be instrumental in taking these ideas forward, actively engaging with patient partners towards shaping a future ISOQOL PE strategy

Patient perspectives on engagement in decision-making in early management of non-ST elevation acute coronary syndrome: a qualitative study

Abstract Background Surveys of patients suggest many want to be actively involved in treatment decisions for acute coronary syndromes. However, patient experiences of their engagement and participation in early phase decision-making have not been well described. Methods We performed a patient led qualitative study to explore patient experiences with decision-making processes when admitted to hospital with non-ST elevation acute coronary syndrome. Trained patient-researchers conducted the study via a three-phase approach using focus groups and semi-structured interviews and employing grounded theory methodology. Results Twenty patients discharged within one year of a non-ST elevation acute coronary syndrome participated in the study. Several common themes emerged. First, patients characterized the admission and early treatment of ACS as a rapidly unfolding process where they had little control. Participants felt they played a passive role in early phase decision-making. Furthermore, participants described feeling reduced capacity for decision-making owing to fear and mental stress from acute illness, and therefore most but not all participants were relieved that expert clinicians made decisions for them. Finally, once past the emergent phase of care, participants wanted to retake a more active role in their treatment and follow-up plans. Conclusions Patients admitted with ACS often do not take an active role in initial clinical decisions, and are satisfied to allow the medical team to direct early phase care. These results provide important insight relevant to designing patient-centered interventions in ACS and other urgent care situations

Patient and Family Member-Led Research in the Intensive Care Unit: A Novel Approach to Patient-Centered Research

<div><p>Introduction</p><p>Engaging patients and family members as partners in research increases the relevance of study results and enhances patient-centered care; how to best engage patients and families in research is unknown.</p><p>Methods</p><p>We tested a novel research approach that engages and trains patients and family members as researchers to see if we could understand and describe the experiences of patients admitted to the intensive care unit (ICU) and their families. Former patients and family members conducted focus groups and interviews with patients (n = 11) and families of surviving (n = 14) and deceased (n = 7) patients from 13 ICUs in Alberta Canada, and analyzed data using conventional content analysis. Separate blinded qualitative researchers conducted an independent analysis.</p><p>Results</p><p>Participants described three phases in the patient/family “ICU journey”; admission to ICU, daily care in ICU, and post-ICU experience. Admission to ICU was characterized by <i>family shock and disorientation</i> with families needing the <i>presence and support of a provider</i>. Participants described five important elements of daily care: <i>honoring the patient’s voice</i>, <i>the need to know</i>, <i>decision-making</i>, <i>medical care</i>, and <i>culture in ICU</i>. The post-ICU experience was characterized by the challenges of the <i>transition from ICU to a hospital ward</i> and <i>long-term effects of critical illness</i>. These “ICU journey” experiences were described as integral to <i>appropriate interactions with the care team</i> and <i>comfort and trust in the ICU</i>, which were perceived as essential for a <i>community of caring</i>. Participants provided suggestions for improvement: 1) <i>provide a dedicated family navigator</i>, 2) <i>increase provider awareness of the fragility of family trust</i>, 3) <i>improve provider communication skills</i>, 4) <i>improve the transition from ICU to hospital ward</i>, and 5) <i>inform patients about the long-term effects of critical illness</i>. Analyses by independent qualitative researchers identified similar themes.</p><p>Conclusions</p><p>Patient and family member-led research is feasible and can identify opportunities for improving care.</p></div

Flow of focus groups and interviews.

<p>Focus groups and interviews to sequentially “set” the initial direction of the research, “collect” data on participant experiences with ICU care and “reflect” on the analyses to derive working theory and recommendations. ^a Includes one participant from Fort McMurray. ^b Includes one participant from Lethbridge.</p

Patient and family comfort and trust in the ICU.

<p>Patient and family member interactions with the care team determine comfort and trust in the ICU.</p