TY - JOUR
T1 - Using Group Concept Mapping to Engage a Hard-to-Reach Population in Research
T2 - Young Adults With Life-Limiting Conditions
AU - Cook, Karen
AU - Bergeron, Kim
N1 - Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded as a CIHR SPOR Patient Engagement Strategy Grant FRN 139755. Ethical approval was obtained from Athabasca University (21795) and a community health Ethics Research Board (2015-073). Informed consent was confirmed in all the three phases.
Funding Information:
GCM offered us flexible strategies to successfully engage our hard-to-reach patient population of YAs with LLC in research. We outlined the sensitive management of the recruitment process, our purposeful decision-making to address potential barriers related to participating, and provided options for study participants to choose their level of involvement in our study. The GCM process led to the identification of three important actions to develop a public health approach to palliative care: improve programming, create a continuum of care, and improve funding along with 30 specific actions to achieve these goals. We outlined five significant attributes of GCM methods for patient engagement in this study. The ability to (1) engage hard-to-reach patient populations; (2) generate group wisdom and conceptualize this wisdom into action-oriented recommendations; (3) equalize the power dynamics among participants including patients, their families, and health and community providers; (4) engage participants as both data generators and collaborative decision makers throughout the research process; and (5) the option to utilize specific GCM software to engage participants, analyze results, and generate visual maps of the outcomes. Finally, we offered suggestions for other researchers using GCM to engage their hard-to-reach patient populations. Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded as a CIHR SPOR Patient Engagement Strategy Grant FRN 139755. Ethical approval was obtained from Athabasca University (21795) and a community health Ethics Research Board (2015-073). Informed consent was confirmed in all the three phases.
Publisher Copyright:
© The Author(s) 2019.
PY - 2019
Y1 - 2019
N2 - 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.
AB - 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.
KW - community-based research
KW - focus groups
KW - mixed methods
KW - PAR—participatory action research
KW - whole-systems change
UR - http://www.scopus.com/inward/record.url?scp=85077156314&partnerID=8YFLogxK
U2 - 10.1177/1609406919891315
DO - 10.1177/1609406919891315
M3 - Journal Article
AN - SCOPUS:85077156314
VL - 18
JO - International Journal of Qualitative Methods
JF - International Journal of Qualitative Methods
ER -