Browsing by Author "Longmore, Shelly"

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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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    Patient discharge from intensive care: an updated scoping review to identify tools and practices to inform high-quality care
    (2021-12-17) Plotnikoff, Kara M.; Krewulak, Karla D.; Hernández, Laura; Spence, Krista; Foster, Nadine; Longmore, Shelly; Straus, Sharon E.; Niven, Daniel J.; Parsons Leigh, Jeanna; Stelfox, Henry T.; Fiest, Kirsten M.
    Abstract Background Critically ill patients require complex care and experience unique needs during and after their stay in the intensive care unit (ICU). Discharging or transferring a patient from the ICU to a hospital ward or back to community care (under the care of a general practitioner) includes several elements that may shape patient outcomes and overall experiences. The aim of this study was to answer the question: what elements facilitate a successful, high-quality discharge from the ICU? Methods This scoping review is an update to a review published in 2015. We searched MEDLINE, EMBASE, CINAHL, and Cochrane databases from 2013-December 3, 2020 including adult, pediatric, and neonatal populations without language restrictions. Data were abstracted using different phases of care framework models, themes, facilitators, and barriers to the ICU discharge process. Results We included 314 articles from 11,461 unique citations. Two-hundred and fifty-eight (82.2%) articles were primary research articles, mostly cohort (118/314, 37.6%) or qualitative (51/314, 16.2%) studies. Common discharge themes across all articles included adverse events, readmission, and mortality after discharge (116/314, 36.9%) and patient and family needs and experiences during discharge (112/314, 35.7%). Common discharge facilitators were discharge education for patients and families (82, 26.1%), successful provider-provider communication (77/314, 24.5%), and organizational tools to facilitate discharge (50/314, 15.9%). Barriers to a successful discharge included patient demographic and clinical characteristics (89/314, 22.3%), healthcare provider workload (21/314, 6.7%), and the impact of current discharge practices on flow and performance (49/314, 15.6%). We identified 47 discharge tools that could be used or adapted to facilitate an ICU discharge. Conclusions Several factors contribute to a successful ICU discharge, with facilitators and barriers present at the patient and family, health care provider, and organizational level. Successful provider-patient and provider-provider communication, and educating and engaging patients and families about the discharge process were important factors in a successful ICU discharge.
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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.