Showing papers by "Kathryn M. Sibley published in 2022"

Systematic overviews of partnership principles and strategies identified from health research about spinal cord injury and related health conditions: A scoping review

Abstract: Study design Scoping review. Objective To identify and provide systematic overviews of partnership principles and strategies identified from health research about spinal cord injury (SCI) and related health conditions. Methods Four health electronic databases (Medline, Embase, CINAHL, PsycINFO) were searched from inception to March 2019. We included articles that described, reflected, and/or evaluated one or more collaborative research activities in health research about SCI, stroke, multiple sclerosis, Parkinson’s disease, amputation, cerebral palsy, spina bifida, amyotrophic lateral sclerosis, acquired brain injury, or wheelchair-users. Partnership principles (i.e. norms or values) and strategies (i.e. observable actions) were extracted and analyzed using directed qualitative content analysis. Results We included 39 articles about SCI (n = 13), stroke (n = 15), multiple sclerosis (n = 5), amputation (n = 2), cerebral palsy (n = 2), Parkinson’s disease (n = 1), and wheelchair users (n = 1). We extracted 110 principles and synthesized them into 13 overarching principles. Principles related to building and maintaining relationships between researchers and research users were most frequently reported. We identified 32 strategies that could be applied at various phases of the research process and 26 strategies that were specific to a research phase (planning, conduct, or dissemination). Conclusion We provided systematic overviews of principles and strategies for research partnerships. These could be used by researchers and research users who want to work in partnership to plan, conduct and/or disseminate their SCI research. The findings informed the development of the new SCI Integrated Knowledge Translation Guiding Principles (www.iktprinciples.com) and will support the implementation of these Principles within the SCI research system.

Selecting implementation models, theories, and frameworks in which to integrate intersectional approaches

Abstract: Models, theories, and frameworks (MTFs) provide the foundation for a cumulative science of implementation, reflecting a shared, evolving understanding of various facets of implementation. One under-represented aspect in implementation MTFs is how intersecting social factors and systems of power and oppression can shape implementation. There is value in enhancing how MTFs in implementation research and practice account for these intersecting factors. Given the large number of MTFs, we sought to identify exemplar MTFs that represent key implementation phases within which to embed an intersectional perspective.We used a five-step process to prioritize MTFs for enhancement with an intersectional lens. We mapped 160 MTFs to three previously prioritized phases of the Knowledge-to-Action (KTA) framework. Next, 17 implementation researchers/practitioners, MTF experts, and intersectionality experts agreed on criteria for prioritizing MTFs within each KTA phase. The experts used a modified Delphi process to agree on an exemplar MTF for each of the three prioritized KTA framework phases. Finally, we reached consensus on the final MTFs and contacted the original MTF developers to confirm MTF versions and explore additional insights.We agreed on three criteria when prioritizing MTFs: acceptability (mean = 3.20, SD = 0.75), applicability (mean = 3.82, SD = 0.72), and usability (median = 4.00, mean = 3.89, SD = 0.31) of the MTF. The top-rated MTFs were the Iowa Model of Evidence-Based Practice to Promote Quality Care for the 'Identify the problem' phase (mean = 4.57, SD = 2.31), the Consolidated Framework for Implementation Research for the 'Assess barriers/facilitators to knowledge use' phase (mean = 5.79, SD = 1.12), and the Behaviour Change Wheel for the 'Select, tailor, implement interventions' phase (mean = 6.36, SD = 1.08).Our interdisciplinary team engaged in a rigorous process to reach consensus on MTFs reflecting specific phases of the implementation process and prioritized each to serve as an exemplar in which to embed intersectional approaches. The resulting MTFs correspond with specific phases of the KTA framework, which itself may be useful for those seeking particular MTFs for particular KTA phases. This approach also provides a template for how other implementation MTFs could be similarly considered in the future.Open Science Framework Registration: osf.io/qgh64.

Patient-Reported Outcomes Measurement in Radiation Oncology: Interpretation of Individual Scores and Change over Time in Clinical Practice

Abstract: Tools for measuring patients’ perceived health and quality of life, such as patient-reported outcome measures (PROMs), inform clinical decisions for patients requiring radiation therapy. However, there may be inconsistencies in how patients interpret and respond to PROMs due to cultural, environmental, personal, or experiential factors. Differential item functioning (DIF) and response shift (RS) refer to differences in the meaning of PROMs between patients or over time (respectively). DIF and RS can threaten the accurate interpretation and use of PROMs, potentially resulting in erroneous conclusions about effectiveness, and flawed individual-level clinical decision-making. Given the empirical evidence of DIF and RS, we aim to review clinical implications and solutions for addressing DIF and RS by providing vignettes from collaborative examinations with workshop participants, as well as the literature. By making these methodological concepts accessible and relevant, for practice, clinicians may feel more confident to ask clarifying questions of patients when PROM scores and the contextual patient information do not align. PROM scores need to be interpreted via dialogue with the patient to avoid misinterpretation due to DIF and RS, which could diminish patient–clinician communication and impede shared decision-making. This work is part of an interdisciplinary knowledge translation initiative focused on the interpretation of PROM scores by clinically-oriented audiences.

Development and usability testing of tools to facilitate incorporating intersectionality in knowledge translation

Abstract: The field of knowledge translation (KT) has been criticized for neglecting contextual and social considerations that influence health equity. Intersectionality, a concept introduced by Black feminist scholars, emphasizes how human experience is shaped by combinations of social factors (e.g., ethnicity, gender) embedded in systemic power structures. Its use has the potential to advance equity considerations in KT. Our objective was to develop and conduct usability testing of tools to support integrating intersectionality in KT through three key phases of KT: identifying the gap; assessing barriers to knowledge use; and selecting, tailoring, and implementing interventions.We used an integrated KT approach and assembled an interdisciplinary development committee who drafted tools. We used a mixed methods approach for usability testing with KT intervention developers that included semi-structured interviews and the System Usability Scale (SUS). We calculated an average SUS score for each tool. We coded interview data using the framework method focusing on actionable feedback. The development committee used the feedback to revise tools, which were formatted by a graphic designer.Nine people working in Canada joined the development committee. They drafted an intersectionality primer and one tool that included recommendations, activities, reflection prompts, and resources for each of the three implementation phases. Thirty-one KT intervention developers from three countries participated in usability testing. They suggested the tools to be shorter, contain more visualizations, and use less jargon. Average SUS scores of the draft tools ranged between 60 and 78/100. The development committee revised and shortened all tools, and added two, one-page summary documents. The final toolkit included six documents.We developed and evaluated tools to help embed intersectionality considerations in KT. These tools go beyond recommending the use of intersectionality to providing practical guidance on how to do this. Future work should develop guidance for enhancing social justice in intersectionality-enhanced KT.

A scoping review to identify and describe the characteristics of theories, models and frameworks of health research partnerships

Abstract: Engaging users of health research, namely knowledge users, as partners in the research process may to lead to evidence that is more relevant to the users. This may optimize the uptake of evidence in healthcare practice, resulting in improved health outcomes or more efficient healthcare systems. However, barriers to involving knowledge users in the research process exist. Theories, models and frameworks may help guide the process of involving knowledge users and address barriers to engaging with knowledge users in research; however, there is little evidence identifying or describing the theories, models and frameworks of health research partnerships.Identify and describe theories, models and frameworks of health research partnerships. Report on concepts of knowledge user engagement represented in identified theories, models and frameworks.We conducted a scoping review. Database (MEDLINE, Embase, CINAHL, PCORI) and ancestry and snowball searches were utilized. Included articles were written in English, published between January 2005 and June 2021, specific to health, a research partnership, and referred to a theory, model or framework. No critical appraisal was conducted. We developed a coding framework to extract details related to the publication (e.g. country, year) and theory, model or framework (e.g. intended users, theoretical underpinning, methodology, methods of development, purpose, concepts of knowledge user engagement). One reviewer conducted data extraction. Descriptive statistics and narrative synthesis were utilized to report the results.We identified 21 874 articles in screening. Thirty-nine models or frameworks were included in data analysis, but no theory. Two models or frameworks (5%) were underpinned by theory. Literature review was the method (n = 11, 28%) most frequently used to develop a model or framework. Guiding or managing a partnership was the most frequently reported purpose of the model/framework (n = 14, 36%). The most represented concept of knowledge user engagement was principles/values (n = 36, 92%).The models and frameworks identified could be utilized by researchers and knowledge users to inform aspects of a health research partnership, such as guidance or implementation of a partnership. Future research evaluating the quality and applicability of the models and frameworks is necessary to help partners decide which model or framework to implement.

How are health research partnerships assessed? A systematic review of outcomes, impacts, terminology and the use of theories, models and frameworks

Abstract: Abstract Background Accurate, consistent assessment of outcomes and impacts is challenging in the health research partnerships domain. Increased focus on tool quality, including conceptual, psychometric and pragmatic characteristics, could improve the quantification, measurement and reporting partnership outcomes and impacts. This cascading review was undertaken as part of a coordinated, multicentre effort to identify, synthesize and assess a vast body of health research partnership literature. Objective To systematically assess the outcomes and impacts of health research partnerships, relevant terminology and the type/use of theories, models and frameworks (TMF) arising from studies using partnership assessment tools with known conceptual, psychometric and pragmatic characteristics. Methods Four electronic databases were searched (MEDLINE, Embase, CINAHL Plus and PsycINFO) from inception to 2 June 2021. We retained studies containing partnership evaluation tools with (1) conceptual foundations (reference to TMF), (2) empirical, quantitative psychometric evidence (evidence of validity and reliability, at minimum) and (3) one or more pragmatic characteristics. Outcomes, impacts, terminology, definitions and TMF type/use were abstracted verbatim from eligible studies using a hybrid (independent abstraction–validation) approach and synthesized using summary statistics (quantitative), inductive thematic analysis and deductive categories (qualitative). Methodological quality was assessed using the Quality Assessment Tool for Studies with Diverse Designs (QATSDD). Results Application of inclusion criteria yielded 37 eligible studies. Study quality scores were high (mean 80%, standard deviation 0.11%) but revealed needed improvements (i.e. methodological, reporting, user involvement in research design). Only 14 (38%) studies reported 48 partnership outcomes and 55 impacts; most were positive effects (43, 90% and 47, 89%, respectively). Most outcomes were positive personal, functional, structural and contextual effects; most impacts were personal, functional and contextual in nature. Most terms described outcomes (39, 89%), and 30 of 44 outcomes/impacts terms were unique, but few were explicitly defined (9, 20%). Terms were complex and mixed on one or more dimensions (e.g. type, temporality, stage, perspective). Most studies made explicit use of study-related TMF (34, 92%). There were 138 unique TMF sources, and these informed tool construct type/choice and hypothesis testing in almost all cases (36, 97%). Conclusion This study synthesized partnership outcomes and impacts, deconstructed term complexities and evolved our understanding of TMF use in tool development, testing and refinement studies. Renewed attention to basic concepts is necessary to advance partnership measurement and research innovation in the field. Systematic review protocol registration: PROSPERO protocol registration: CRD42021137932 https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=137932 .

Recognition of knowledge translation practice in Canadian health sciences tenure and promotion: A content analysis of institutional policy documents

Abstract: Background and objective There has been growing emphasis on increasing impacts of academic health research by integrating research findings in healthcare. The concept of knowledge translation (KT) has been widely adopted in Canada to guide this work, although lack of recognition in tenure and promotion (T&P) structures have been identified as barrier to researchers undertaking KT. Our objective was to explore how KT is considered in institutional T&P documentation in Canadian academic health sciences. Methods We conducted content analysis of T&P documents acquired from 19 purposively sampled research-intensive or largest regional Canadian institutions in 2020–2021. We coded text for four components of KT (synthesis, dissemination, exchange, application). We identified clusters of related groups of documents interpreted together within the same institution. We summarized manifest KT content with descriptive statistics and identified latent categories related to how KT is considered in T&P documentation. Results We acquired 89 unique documents from 17 institutions that formed 48 document clusters. Most of the 1057 text segments were categorized as dissemination (n = 851, 81%), which was included in 47 document clusters (98%). 15 document clusters (31%) included all four KT categories, while one (2%) did not have any KT categories identified. We identified two latent categories: primarily implicit recognition of KT; and an overall lack of clarity on KT. Conclusions Our analysis of T&P documents from primarily research-intensive Canadian universities showed a lack of formal recognition for a comprehensive approach to KT and emphasis on traditional dissemination. We recommend that institutions explicitly and comprehensively consider KT in T&P and align documentation and procedures to reflect these values.

Older adult perspectives about online exercise classes during the covid-19 pandemic at multiple time points

Abstract: Abstract Engaging in physical activity can bring health benefits for older adults. However, during the pandemic the availability of in-person exercise classes has been sporadic. As such, online exercise programs have become more common. This research had the goal of exploring the uptake of online exercise programs by older adults in Manitoba, Canada in the first few months in the pandemic and then more than 1.5 years into the pandemic. Older adults (65 years and older) were recruited via emails from a variety of community organizations. Participants completed anonymous online surveys in summer 2020 (n=678) and fall 2021 (n=570). Less than 50% of respondents reported participating in online exercise classes during the pandemic in both surveys. For both surveys, pre-recorded classes were the most common, however, this decreased from 80% in the first survey, to 57% in the second survey. Conversely, live classes where the instructor could see the participants increased from 17% in the 2020 survey, to 47% in the 2021 survey. Additionally, platform use shifted from YouTube as the most popular in the first survey, to Zoom in the second survey. Most of the online classes originated from their local communities. Of those who participated in online exercise early and later in the pandemic, about two thirds reported that they would continue online exercise classes outside of the pandemic. A major reason for not participating was because they enjoy the social aspect of in-person classes. The perspectives of the study participants will be valuable for policymakers, programmers, and instructors.

Re-braiding the Strands of Life through Community Rehabilitation, Home Care, and Informal Support: A Longitudinal Collective Case Study

Abstract: Abstract Limited research exists on the experiences of older adults participating in community rehabilitation. Our longitudinal, collective case study explored older adults’ experiences while they engaged in community rehabilitation and home care services, as well as family caregivers’ concurrent experiences. Drawing on interpretive description, we inductively analysed interview data gathered at three points over 3–6 months from six family dyads. Questions focused on activities of daily living, instrumental activities of daily living and other meaningful activities affected by changes in the older adult’s health. From our thematic analysis, three themes emerged: (a) Centring community rehabilitation and home care services around the older adult and family; (b) Understanding the intricate interface of formal and informal supports; and (c) Supporting the meaningful aspects of life. Our findings suggest a metaphor of re-braiding, a reconfiguration of activities that requires increased integration of formal and informal supports within home care and community rehabilitation.

Connecting for Care: a protocol for a mixed-method social network analysis to advance knowledge translation in the field of child development and rehabilitation

Abstract: Abstract Background Connections between individuals and organizations can impact knowledge translation (KT). This finding has led to growing interest in the study of social networks as drivers of KT. Social networks are formed by the patterns of relationships or connections generated through interactions. These connections can be studied using social network analysis (SNA) methodologies. The relatively small yet diverse community in the field of child development and rehabilitation (CD&R) in Canada offers an ideal case study for applying SNA. The purposes of this work are to (1) quantify and map the structure of Canadian CD&R KT networks among four groups: families, health care providers, KT support personnel, and researchers; (2) explore participant perspectives of the network structure and of KT barriers and facilitators within it; and (3) generate recommendations to improve KT capacity within and between groups. Aligning with the principles of integrated KT, we have assembled a national team whose members contribute throughout the research and KT process, with representation from the four participant groups. Methods A sequential, explanatory mixed-method study, within the bounds of a national case study in the field of CD&R. Objective 1: A national SNA survey of family members with advocacy/partnership experience, health care providers, KT support personnel, and researchers, paired with an anonymous survey for family member without partnership experience, will gather data to describe the KT networks within and between groups and identify barriers and facilitators of network connections. Objective 2: Purposive sampling from Phase 1 will identify semi-structured interview participants with whom to examine conventional and network-driven KT barriers, facilitators, and mitigating strategies. Objective 3: Intervention mapping and a Delphi process will generate recommendations for network and conventional interventions to strengthen the network and facilitate KT. Discussion This study will integrate network and KT theory in mapping the structure of the CD&R KT network, enhance our understanding of conventional and network-focused KT barriers and facilitators, and provide recommendations to strengthen KT networks. Recommendations can be applied and tested within the field of CD&R to improve KT, with the aim of ensuring children achieve the best health outcomes possible through timely access to effective healthcare.

Factors associated with reporting of the Prevention of Falls Network Europe (ProFaNE) core outcome set domains in randomized trials on falls in older people: a citation analysis and correlational study

Abstract: Abstract Background Core outcome sets are advocated as a means to standardize outcome reporting across randomized controlled trials (RCTs) and reduce selective outcome reporting. In 2005, the Prevention of Falls Network Europe (ProFaNE) published a core outcome set identifying five domains that should be measured and reported, at a minimum, in RCTs or meta-analysis on falls in older people. As reporting of all five domains of the ProFaNE core outcome set has been minimal, we set out to investigate factors associated with reporting of the ProFaNE core outcome set domains in a purposeful sample of RCTs on falls in older people. Methods We conducted a systematic citation analysis to identify all reports of RCTs focused on falls in older people that cited the ProFaNE core outcome set between October 2005 and July 2021. We abstracted author-level, study-level, and manuscript-level data and whether each domain of the ProFaNE core outcome set was reported. We used penalized LASSO regression to identify factors associated with the mean percentage of ProFaNE core outcome set domains reported. Results We identified 85 eligible reports of RCTs. Articles were published between 2007 and 2021, described 75 unique RCTs, and were authored by 76 unique corresponding authors. The percentage of ProFaNE core outcome set domains reported ranged from 0 to 100%, with a median of 40% and mean (standard deviation, SD) of 52.2% (25.1). RCTs funded by a non-industry source reported a higher mean percentage of domains than RCTs without a non-industry funding source (estimated mean difference = 17.5%; 95% confidence interval (CI) 1.8–33.2). RCTs examining exercise (15.4%; 95% CI 1.9–28.9) or multi-component/factorial (17.4%; 95% CI 4.7–30.1) interventions each reported a higher mean percentage of domains than RCTs examining other intervention types. Conclusions We found that RCTs funded by at least one non-industry source, examining exercise or multi-component/factorial interventions, reported the highest percentages of ProFaNE core outcome set domains. Findings may help inform strategies to increase the impact of the ProFaNE core outcome set. Ultimately, this may lead to enhanced knowledge of the effectiveness and safety of interventions to prevent and/or manage falls in older people.

Building consensus in research partnerships: a scoping review of consensus methods

Abstract: Research partnership approaches that engage community members within the research team (for example, integrated knowledge translation, community-based participatory research) are typically used to enhance the relevance and usefulness of research findings. However, research outcomes generated through partnered research do not de facto address the priorities of those most affected nor take inclusion or power dynamics into consideration. Consensus methods (for example, Delphi, Deliberative Dialogue) can be used to develop evidence-based solutions by addressing the groups’ needs and priorities. Limited research has examined how consensus methods are used by research partnerships. Using the PRISMA-ScR checklist as a guide, this scoping review sought to better understand the use of consensus methods in research partnerships. The search strategy involved four databases (MEDLINE, PsycINFO, EMBASE and CINAHL Plus). A total of 6,654 citations were screened, 404 were advanced for full text review, and 34 studies met eligibility criteria. Data from the 34 studies were extracted and iteratively analysed by three members of our research team. At least 11 different consensus methods were used with variations of the Delphi being most common. Issues of inclusion and power dynamics were rarely discussed. Overall, there was limited reporting of consensus methods, partnership approaches, and/or power dynamics. This review extends the literature by providing an overview of consensus methods that have been conducted in research partnerships and how they have been executed. We offer initial considerations for conducting and reporting on the use of consensus methods in research co-production.