Concept mapping methodology and community-engaged research: A perfect pairing

Vaughn, Lisa M.; Jones, Jennifer R.; Booth, Emily; Burke, Jessica G.

doi:10.1016/j.evalprogplan.2016.08.013

Cited by 57 publications

(38 citation statements)

References 58 publications

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“…is similar to other findings using GCM with hard-to-reach populations (Kane & Rosas, 2018;Mills et al, 2015;Vaughn et al, 2017). The software also allowed for the generation of the concept maps based on the quantitative methods used in GCM.…”

Section: Discussionsupporting

confidence: 79%

Using Group Concept Mapping to Engage a Hard-to-Reach Population in Research: Young Adults With Life-Limiting Conditions

Cook

Bergeron

2019

International Journal of Qualitative Methods

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Patient engagement strategies are used in community-based participatory research. A successful strategy requires that patients, researchers, and health-care providers collaborate to create meaningful outcomes. Hard-to-reach patient populations such as those living with complex physical or psychosocial conditions, who are geographically dispersed, or who are disadvantaged financially or socially, experience judgment, stigmatization, and marginalization within society and in the research process. Therefore, strategies are needed to better engage hard-to-reach populations in research. One strategy to engage this population is group concept mapping (GCM). This article illustrates how GCM was utilized to engage a hard-to-reach population of young adults (YAs) with life-limiting conditions (LLC), parents of YAs with LLC, and health and health and community experts. Study participants were involved in generating, analyzing, and interpreting data. Five attributes of GCM are outlined, and suggestions are made for how other researchers could use GCM to engage their hard-to-reach patient populations.

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Section: Discussionsupporting

confidence: 79%

Using Group Concept Mapping to Engage a Hard-to-Reach Population in Research: Young Adults With Life-Limiting Conditions

Cook

Bergeron

2019

International Journal of Qualitative Methods

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“…The WU-CDTR used concept mapping as a tool to develop a conceptual framework to inform and refine future directions for diabetes translation research. Concept mapping has been used extensively across a variety of fields to advance and recommend research,18–21 educational methods,22 and healthcare approaches 23–25. It has also been used to create logic models for a national program,26 develop various state plans,27 28 and design chronic disease competencies 29.…”

Section: Discussionmentioning

confidence: 99%

Developing priorities to achieve health equity through diabetes translation research: a concept mapping study

Phad

Johnston

Tabak

et al. 2019

BMJ Open Diab Res Care

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IntroductionThe goal of diabetes translation research is to advance research into practice and ensure equitable benefit from scientific evidence. This study uses concept mapping to inform and refine future directions of diabetes translation research with the goal of achieving health equity in diabetes prevention and control.Research design and methodsThis study used concept mapping and input from a national network of diabetes researchers and public health practitioners. Concept mapping is a mixed-method, participant-based process. First, participants generated statements by responding to a focus prompt (“To eliminate disparities and achieve health equity in the prevention and treatment of diabetes, research should…”). Participants then sorted statements by conceptual similarity and rated each statement on importance and feasibility (Likert scale of 1–5). A cluster map was created using multidimensional scaling and hierarchical cluster analysis; statements were plotted by average importance and feasibility.ResultsTen clusters were identified containing between 6 and 12 statements from 95 total generated statements. The ranges of average importance and feasibility ratings for clusters were fairly high and narrow (3.62–4.09; 3.10–3.93, respectively). Clusters with the most statements in the “go-zone” quadrant (above average importance/feasibility) were community and partner engagement (n=7), dissemination and implementation principles (n=4), and enrichment and capacity building (n=4). Clusters with the most statements in the “innovative-targets” quadrant (above average importance, below average feasibility) included next generation interventions (n=6), policy approaches (n=4), and interventions for specific populations (n=4).ConclusionsThis study created a framework of 10 priority areas to guide current and future efforts in diabetes translation research to achieve health equity. Themes rated as highly important and feasible provide the basis to evaluate current research support. Future efforts should explore how to best support innovative-targets, those rated highly important but less feasible.

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“…Notably, experience from research shows that the issue of participation of service users or community members in the development of measures and indicators is highly controversial (as is the definition of stakeholders in community based research) as there are no specific guidelines regarding participation rates and the optimal balance between stakeholders groups [ 108 , 109 ]. This lack of guidance partly explains the low to moderate levels of participation of patients and service users in community engaged concept mapping research on health systems, where the majority of studies examined in systematic review appeared to adopt a consultative rather a collaborative approach to community participation [ 55 ]. Informed by a human rights approach to disability, our study set a goal to create conditions that would allow bi-directional input and collaboration with persons with disabilities who have traditionally been neglected in the discussions about accountability and monitoring.…”

Section: Discussionmentioning

confidence: 99%

“…It is considered a well-established method in public health research [ 51 , 52 ] that has been applied successfully in the past to develop measurement and evaluation frameworks and tools [ 53 ]. Acknowledging the utility and value of GCM as a participatory approach that democratizes the process of knowledge co-production [ 54 , 55 ], experts in rehabilitation research have recommended GCM as an appropriate technique of concept elicitation that helps generate useful insights from diverse stakeholders to guide the development of standardized measurement tools [ 56 ]. In addition, as a mixed method, GCM deploys advanced statistical techniques that allow data from multiple sources to be combined and analysed to produce a mental model that reflects the collective thinking of participants [ 57 ].…”

Section: Methodsmentioning

confidence: 99%

Using concept mapping to develop a human rights based indicator framework to assess country efforts to strengthen rehabilitation provision and policy: the Rehabilitation System Diagnosis and Dialogue framework (RESYST)

et al. 2018

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BackgroundRehabilitation is crucial for the realization of the right to health and a proper concern of global health. Yet, reliable information to guide rehabilitation service planning is unavailable in many countries in part due to the lack of appropriate indicators. To ensure universal health coverage and meet the central imperative of “leaving no one behind” countries must be able to assess key aspects of rehabilitation policy and provision and monitor how they have discharged their human rights responsibilities towards those most disadvantaged, including people with disability. This article describes the process of developing an expert guided indicator framework to assess governments’ efforts and progress in strengthening rehabilitation in line with the Convention on the Rights of Persons with Disabilities.MethodsA systems methodology - concept mapping - was used to capture, aggregate and confirm the knowledge of diverse stakeholders on measures thought to be useful for monitoring the implementation of the Convention with respect to health related rehabilitation. Fifty-six individuals generated a list of 107 indicators through online brainstorming which were subsequently sorted by 37 experts from the original panel into non overlapping categories. Forty-one participants rated the indicators for importance and feasibility. Multivariate statistical techniques where used to explore patterns and themes in the data and create the indicators’ organizing framework which was verified and interpreted by a select number of participants.ResultsA concept map of 11 clusters of indicators emerged from the analysis grouped into three broader themes: Governance and Leadership (3 clusters); Service Delivery, Financing and Oversight (6 clusters); and Human Resources (2 clusters). The indicator framework was comprehensive and well aligned with the Convention. On average, there was a moderately positive correlation between importance and feasibility of the indicators (r = .58) with experts prioritizing the indicators contained in the clusters of the Governance and Leadership domain. Two of the most important indicators arose from the Service Delivery, Financing and Oversight domain and reflect the need to monitor unmet needs and barriers in access to rehabilitation. In total, 59 indicators achieved above average score for importance and comprised the two–tiered priority set of indicators.ConclusionConcept mapping was successful in generating a shared model that enables a system’s view of the most critical legal, policy and programmatic factors that must be addressed when assessing country efforts to reform, upscale and improve rehabilitation services. The Rehabilitation Systems Diagnosis and Dialogue framework provides a data driven basis for the development of standardized data collection tools to facilitate comparative analysis of rehabilitation systems. Despite agreement on the importance and feasibility of 59 indicators, further research is needed to appraise the applicability and utility of the indicators and secure a reali...

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Concept mapping methodology and community-engaged research: A perfect pairing

Cited by 57 publications

References 58 publications

Using Group Concept Mapping to Engage a Hard-to-Reach Population in Research: Young Adults With Life-Limiting Conditions

Using Group Concept Mapping to Engage a Hard-to-Reach Population in Research: Young Adults With Life-Limiting Conditions

Developing priorities to achieve health equity through diabetes translation research: a concept mapping study

Using concept mapping to develop a human rights based indicator framework to assess country efforts to strengthen rehabilitation provision and policy: the Rehabilitation System Diagnosis and Dialogue framework (RESYST)

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