Themes for evaluating the quality of initiatives to engage patients and family caregivers in decision-making in healthcare systems: A scoping review

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dc.contributor.authorHamilton, Clayon B.
dc.contributor.authorDehnadi, Maryam
dc.contributor.authorSnow, M. Elizabeth
dc.contributor.authorClark, Nancy
dc.contributor.authorLui, Michelle
dc.contributor.authorMcLean, Janet
dc.contributor.authorMamdani, Hussein
dc.contributor.authorKooijman, Allison L.
dc.contributor.authorBubber, Vikram
dc.contributor.authorHoefer, Tammy
dc.contributor.authorPatients as Partners Team
dc.contributor.authorLi, Linda C.
dc.date.accessioned2025-08-15T19:08:11Z
dc.date.available2025-08-15T19:08:11Z
dc.date.issued2021
dc.description.abstractObjective: To identify the key themes for evaluating the quality of initiatives to engage patients and family caregivers in decision-making across the organisation and system domains of healthcare systems. Methods: We conducted a scoping review. Seven databases of journal articles were searched from their inception to June 2019. Eligible articles were literature reviews published in English and provided useful information for determining aspects of engaging patients and family caregivers in decision-making to evaluate. We extracted text under three predetermined categories: structure, process and outcomes that were adapted from the Donabedian conceptual framework. These excerpts were then independently open-coded among four researchers. The subsequent themes and their corresponding excerpts were summarised to provide a rich description of each theme. Results: Of 7747 unique articles identified, 366 were potentially relevant, from which we selected the 42 literature reviews. 18 unique themes were identified across the three predetermined categories. There were six structure themes: engagement plan, level of engagement, time and timing of engagement, format and composition, commitment to support and environment. There were four process themes: objectives, engagement approach, communication and engagement activities. There were eight outcome themes: decision-making process, stakeholder relationship, capacity development, stakeholder experience, shape policy/service/programme, health status, healthcare quality, and cost-effectiveness. Conclusions: The 18 themes and their descriptions provide a foundation for identifying constructs and selecting measures to evaluate the quality of initiatives for engaging patients and family caregivers in healthcare system decision-making within the organisation and system domains. The themes can be used to investigate the mechanisms through which relevant initiatives are effective and investigate their effectiveness.
dc.description.reviewstatusReviewed
dc.description.scholarlevelFaculty
dc.description.sponsorshipThis work is supported by SPOR Evidence Alliance through funding from the Canadian Institutes of Health Research (CIHR) under the Strategy for Patient Oriented-Research (SPOR) initiative grant number GSR-154442. CH was supported by a CIHR-MSFHR Health System Impact Fellowship from the BC Ministry of Health, Canadian Institutes of Health Research, and Michael Smith Foundation for Health Research (MSFHR). CH was also supported by a MSFHR Research Trainee award. LCL holds the Harold Robinson/Arthritis Society Chair in Arthritic Diseases, and is supported by the Canada Research Chair Programme. She was also supported by a MSFHR Scholar Award.
dc.identifier.citationHamilton, C. B., Dehnadi, M., Snow, M. E., Clark, N., Lui, M., McLean, J., Mamdani, H., Kooijman, A. L., Bubber, V., Hoefer, T., Patients as Partners Team, & Li, L. C. (2021). Themes for evaluating the quality of initiatives to engage patients and family caregivers in decision-making in healthcare systems: A scoping review. BMJ Open, 11(10), e050208. https://doi.org/10.1136/bmjopen-2021-050208
dc.identifier.urihttps://doi.org/10.1136/bmjopen-2021-050208
dc.identifier.urihttps://hdl.handle.net/1828/22606
dc.language.isoen
dc.publisherBMJ Open
dc.rightsCC BY-NC 4.0
dc.rights.urihttp://creativecommons.org/licenses/by-nc/4.0/
dc.subject.departmentSchool of Nursing
dc.titleThemes for evaluating the quality of initiatives to engage patients and family caregivers in decision-making in healthcare systems: A scoping review
dc.typeArticle

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