Browsing by Author "Sept, Bonnie G."

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    A scoping review of methods to measure and evaluate citizen engagement in health research
    (2022-12-10) Shahid, Anmol; Lalani, Inara N.; Rosgen, Brianna K.; Sept, Bonnie G.; Longmore, Shelly; Parsons Leigh, Jeanna; Stelfox, Henry T.; Fiest, Kirsten M.
    Abstract Background Citizen engagement, or partnering with interested members of the public in health research, is becoming more common. While ongoing assessment of citizen engagement practices is considered important to its success, there is little clarity around aspects of citizen engagement that are important to assess (i.e., what to look for) and methods to assess (i.e., how to measure and/ or evaluate) citizen engagement in health research. Methods In this scoping review, we included peer-reviewed literature that focused primarily on method(s) to measure and/or evaluate citizen engagement in health research. Independently and in duplicate, we completed title and abstract screening and full-text screening and extracted data including document characteristics, citizen engagement definitions and goals, and methods to measure or evaluate citizen engagement (including characteristics of these methods). Results Our search yielded 16,762 records of which 33 records (31 peer-reviewed articles, one government report, one conference proceeding) met our inclusion criteria. Studies discussed engaging citizens (i.e., patients [n = 16], members of the public [n = 7], service users/consumers [n = 4], individuals from specific disease groups [n = 3]) in research processes. Reported methods of citizen engagement measurement and evaluation included frameworks, discussion-based methods (i.e., focus groups, interviews), survey-based methods (e.g., audits, questionnaires), and other methods (e.g., observation, prioritization tasks). Methods to measure and evaluate citizen engagement commonly focused on collecting perceptions of citizens and researchers on aspects of citizen engagement including empowerment, impact, respect, support, and value. Discussion and conclusion We found that methods to measure and/or evaluate citizen engagement in health research vary widely but share some similarities in aspect of citizen engagement considered important to measure or evaluate. These aspects could be used to devise a more standardized, modifiable, and widely applicable framework for measuring and evaluating citizen engagement in research. Patient or public contribution Two citizen team members were involved as equal partners in study design and interpretation of its findings. Systematic review registration Open Science Framework (10.17605/OSF.IO/HZCBR).
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    Co-development of a transitions in care bundle for patient transitions from the intensive care unit: a mixed-methods analysis of a stakeholder consensus meeting
    (2022-01-02) Rosgen, Brianna K.; Plotnikoff, Kara M.; Krewulak, Karla D.; Shahid, Anmol; Hernandez, Laura; Sept, Bonnie G.; Morrissey, Jeanna; Robertson, Kristin; Fraser, Nancy; Niven, Daniel J.; Straus, Sharon E.; Leigh, Jeanna P.; Stelfox, Henry T.; Fiest, Kirsten M.
    Abstract Background Intensive care unit (ICU) patients undergoing transitions in care are at increased risk of adverse events and gaps in medical care. We evaluated existing patient- and family-centered transitions in care tools and identified facilitators, barriers, and implementation considerations for the application of a transitions in care bundle in critically ill adults (i.e., a collection of evidence-based patient- and family-centred tools to improve outcomes during and after transitions from the intensive care unit [ICU] to hospital ward or community). Methods We conducted a concurrent mixed methods (quan + QUAL) study, including stakeholders with experience in ICU transitions in care (i.e., patient/family partners, researchers, decision-makers, providers, and other knowledge-users). First, participants scored existing transitions in care tools using the modified Appraisal of Guidelines, Research and Evaluation (AGREE-II) framework. Transitions in care tools were discussed by stakeholders and either accepted, accepted with modifications, or rejected if consensus was achieved (≥70% agreement). We summarized quantitative results using frequencies and medians. Second, we conducted a qualitative analysis of participant discussions using grounded theory principles to elicit factors influencing AGREE-II scores, and to identify barriers, facilitators, and implementation considerations for the application of a transitions in care bundle. Results Twenty-nine stakeholders attended. Of 18 transitions in care tools evaluated, seven (39%) tools were accepted with modifications, one (6%) tool was rejected, and consensus was not reached for ten (55%) tools. Qualitative analysis found that participants’ AGREE-II rankings were influenced by: 1) language (e.g., inclusive, balance of jargon and lay language); 2) if the tool was comprehensive (i.e., could stand alone); 3) if the tool could be individualized for each patient; 4) impact to clinical workflow; and 5) how the tool was presented (e.g., brochure, video). Participants discussed implementation considerations for a patient- and family-centered transitions in care bundle: 1) delivery (e.g., tool format and timing); 2) continuity (e.g., follow-up after ICU discharge); and 3) continuous evaluation and improvement (e.g., frequency of tool use). Participants discussed existing facilitators (e.g., collaboration and co-design) and barriers (e.g., health system capacity) that would impact application of a transitions in care bundle. Conclusions Findings will inform future research to develop a transitions in care bundle for transitions from the ICU, co-designed with patients, families, providers, researchers, decision-makers, and knowledge-users.
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    Incorporating and evaluating citizen engagement in health research: a scoping review protocol
    (2021-09-28) Shahid, Anmol; Rosgen, Brianna K.; Krewulak, Karla D.; Lorenzetti, Diane L.; Foster, Nadine; Sept, Bonnie G.; Leigh, Jeanna P.; Stelfox, Henry T.; Fiest, Kirsten M.
    Abstract Background Citizen engagement in research is an emerging practice that involves members of the general public in research processes such as priority setting, planning, decision-making, research conduct, implementation, evaluation, and dissemination. Engaging citizens in research, particularly health research, increases the relevance of study findings, minimizes waste by facilitating stewardship over resources, and builds public trust in the research. While several existing frameworks guide the application of citizen engagement principles to health research, it is unclear how citizen engagement can be utilized to maximize benefits and minimize risks and challenges in health research. To address the gaps in knowledge around citizen engagement in health research, we propose a scoping review to synthesize the state of knowledge on methods to incorporate and evaluate citizen engagement in research. A protocol is presented in this manuscript. Methods The methodology for our scoping review is guided by Arksey and O’ Malley’s framework for scoping reviews, and additional recommendations by Levac and colleagues. We will include peer-reviewed and gray literature that report on citizen engagement in health research (including biomedical, clinical, health systems and services, and social, cultural, environmental and population health) and report method(s) to conduct, measure, or evaluate citizen engagement. We will systematically search electronic databases (MEDLINE, EMBASE, CINAHL, JSTOR, PsycINFO, Scopus, and Science Direct) from inception onwards and search relevant organizations’ websites for additional studies, frameworks, and reports on citizen engagement. Title and abstract and full-text citations will be screened independently and in duplicate. Data will be extracted independently and in duplicate, including document characteristics, citizen engagement definitions and goals, and outcomes of citizen engagement (e.g., barriers, facilitators). Discussion This review will synthesize the definitions, goals, methods, outcomes, and significance of citizen engagement in health research, as well as any potential barriers, facilitators, and challenges outlined in existing literature. The findings will provide an evidence-based foundation for developing new or improved guidance for citizen engagement in health research. Overall, we anticipate that our scoping review will be a preliminary step to meaningful engagement of citizens in research and strengthen the relationship between the scientific community and the public through transparency and collaboration. Systematic review registration Open Science Framework  https://osf.io/hzcbr .
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    Study protocol: development and pilot testing of the Critical Care Pain Observation Tool for families (CPOT-Fam)
    (2022-07-16) Shahid, Anmol; Owen, Victoria S.; Sept, Bonnie G.; Longmore, Shelly; Soo, Andrea; Brundin-Mather, Rebecca; Krewulak, Karla D.; Moss, Stephana J.; Plotnikoff, Kara M.; Gélinas, Céline; Fiest, Kirsten M.; Stelfox, Henry T.
    Abstract Background Patients in the intensive care unit (ICU) often have limited ability to communicate making it more difficult to identify and effectively treat their pain. Family caregivers or close friends of critically ill patients may be able to identify signs of pain before the clinical care team and could potentially assist in routine pain assessments. This study will adapt the Critical Care Pain Observation Tool (CPOT) for use by family members to create the CPOT-Fam and compare family CPOT-Fam assessments with nurse-provided CPOT assessments for a given patient. Methods This study will be executed in two phases: 1) Development of the CPOT-Fam — A working group of patient partners, ICU clinicians, and researchers will adapt the CPOT for use by family caregivers (creating the CPOT-Fam) and produce an accompanying educational module to deliver information on pain and how to use the tool. The CPOT-Fam will undergo preclinical testing with participants (i.e., members of the public and family caregivers of critically ill adults), who will complete the educational module and provide CPOT-Fam scores on sample cases. Feedback on the CPOT-Fam will be collected. 2) Pilot testing the CPOT — Fam family caregivers of critically ill adults will complete the educational module and provide information on the following: (1) demographics, (2) anxiety, (3) caregiving self-efficacy, and (4) satisfaction with care in the ICU. Family caregivers will then provide a proxy assessment of their critically ill loved one’s pain through the CPOT-Fam and also provide a subjective (i.e., questionnaire-based including open-ended responses) account of their loved one’s pain status. A comparison (i.e., agreement) will be made between family caregiver provided CPOT-Fam scores and ICU nurse-provided CPOT scores (collected from the provincial health information system), calculated independently and blinded to one another. Feasibility and acceptability of the CPOT-Fam will be determined. Discussion The results of this work will produce a family caregiver CPOT (i.e., CPOT-Fam), determine feasibility and acceptability of the CPOT-Fam, and compare pain assessments conducted by family caregivers and ICU nurses. The results will inform whether a larger study to determine a role for family caregivers in ICU pain assessment using the CPOT-Fam is warranted.