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Jacqueline Casillas
PADRES Contra El Cáncer (PADRES)-UCLA Research Collaborative: Defining a Functional Work Model for Conducting Survivorship Research in the Latino Community
Abstract Text:
Background/Objectives: To formalize the infrastructure of the PADRES and UCLA’s Cancer Center in order to understand how to best develop culturally-relevant educational interventions for Latino AYA survivors given their risk for late effects due to cancer treatment. Methods: Using the method of community-partnered participatory research (CPPR), we defined 7 domains for formalization of the partnership. After the 7 infrastructure domains were defined, we used the Donabedian model: structure, process, outcome metrics were developed to assess the partnership reproducibility. Results: The 7 infrastructure domains were: (1) orientation/formalization of the members; (2 - 5) regularly scheduled meetings with principal investigators; internal advisory committee (IAC), community advisory group (CAG), staff; (6) development of mutual trust within/among all groups; (7) define shared leadership goals/visions. The 13 process measures were: (1) attendance records at team meetings; (2) equal participation at meetings; (3) collaborative writing of year 1 abstract; (4) IAC providing constructive feedback for partnership formation; (5) CAG IRB application collaborative development; (6) successful recruitment of CAG; (7) regularly scheduled journal club; (8) addressing the needs of the community through the agenda tool; (9) sharing of resources; (10) development of cross-training manual; (11) site visits of community sites; (12) development of well-organized agendas; and (13) weekly coordinator meetings. Implications: Development of the infrastructure required redefinition of our research approach to use CPPR methods and resulted in defining the process and outcome measures of the collaborative research infrastructure. Next steps: Using the CAG, we will evaluate the acceptability of a photonovela on three key survivorship messages.
PADRES Contra El Cáncer (PADRES)-UCLA Research Collaborative: Defining a Functional Work Model for Conducting Survivorship Research in the Latino Community
Abstract Text:
Background/Objectives: To formalize the infrastructure of the PADRES and UCLA’s Cancer Center in order to understand how to best develop culturally-relevant educational interventions for Latino AYA survivors given their risk for late effects due to cancer treatment. Methods: Using the method of community-partnered participatory research (CPPR), we defined 7 domains for formalization of the partnership. After the 7 infrastructure domains were defined, we used the Donabedian model: structure, process, outcome metrics were developed to assess the partnership reproducibility. Results: The 7 infrastructure domains were: (1) orientation/formalization of the members; (2 - 5) regularly scheduled meetings with principal investigators; internal advisory committee (IAC), community advisory group (CAG), staff; (6) development of mutual trust within/among all groups; (7) define shared leadership goals/visions. The 13 process measures were: (1) attendance records at team meetings; (2) equal participation at meetings; (3) collaborative writing of year 1 abstract; (4) IAC providing constructive feedback for partnership formation; (5) CAG IRB application collaborative development; (6) successful recruitment of CAG; (7) regularly scheduled journal club; (8) addressing the needs of the community through the agenda tool; (9) sharing of resources; (10) development of cross-training manual; (11) site visits of community sites; (12) development of well-organized agendas; and (13) weekly coordinator meetings. Implications: Development of the infrastructure required redefinition of our research approach to use CPPR methods and resulted in defining the process and outcome measures of the collaborative research infrastructure. Next steps: Using the CAG, we will evaluate the acceptability of a photonovela on three key survivorship messages.
