Evaluating the Efficacy of a Stakeholder Advisory Board in Pediatric Palliative Care Health Equity Research
Abstract
Background
Black and Indigenous populations carry a disproportionate burden of pediatric serious illness in the US. The literature suggests that these groups receive lower quality of hospice and palliative medicine (HPM) and are underrepresented in HPM research. Few studies center the voices of Black and Indigenous patients/families in pediatric HPM. Given the well-documented benefits of HPM, addressing inequities in pediatric HPM is critical to disrupting downstream disparities. Community-based participatory research (CBPR) with evaluation of engagement may be an effective approach to centering these populations’ experiences while supporting stakeholders with diverse lived experiences. This evaluation seeks to understand stakeholder advisory board (SAB) member engagement to ensure each member’s voice is heard given the number of members and their diverse roles as stakeholders within pediatric serious illness.
Methods
Thematic analysis was performed on Zoom chat box text, observation data, and narrative feedback on post-meeting surveys from 3 SAB meetings held from September-November 2022. Descriptive statistics were performed to summarize and compare questions assessing engagement across meetings. Triangulation using meta-matrices was conducted to collate and summarize the main findings and themes regarding engagement across data sources.
Results
SAB meetings concluded in November; thus, data analysis is in progress. We will present full findings on engagement, emergent themes, and recommendations for engaging stakeholders with diverse lived experiences. Preliminary findings indicate that engagement increased across meetings as did members’ clarity around their unique contributions to the SAB. Themes from open-ended questions on post-meeting surveys enabled the research team to provide tailored support and integrate SAB members’ suggestions to promote bidirectional partnerships between SAB members and the research team.
Conclusion
Our findings suggest that CBPR is an effective approach to pediatric HPM health equity research. Furthermore, they demonstrate that evaluating engagement in SABs promotes collaborative leadership and provides opportunities for early intervention of barriers to participation.
Keywords
Palliative, pediatric, equity, evaluation, community-based participatory research
Evaluating the Efficacy of a Stakeholder Advisory Board in Pediatric Palliative Care Health Equity Research
Background
Black and Indigenous populations carry a disproportionate burden of pediatric serious illness in the US. The literature suggests that these groups receive lower quality of hospice and palliative medicine (HPM) and are underrepresented in HPM research. Few studies center the voices of Black and Indigenous patients/families in pediatric HPM. Given the well-documented benefits of HPM, addressing inequities in pediatric HPM is critical to disrupting downstream disparities. Community-based participatory research (CBPR) with evaluation of engagement may be an effective approach to centering these populations’ experiences while supporting stakeholders with diverse lived experiences. This evaluation seeks to understand stakeholder advisory board (SAB) member engagement to ensure each member’s voice is heard given the number of members and their diverse roles as stakeholders within pediatric serious illness.
Methods
Thematic analysis was performed on Zoom chat box text, observation data, and narrative feedback on post-meeting surveys from 3 SAB meetings held from September-November 2022. Descriptive statistics were performed to summarize and compare questions assessing engagement across meetings. Triangulation using meta-matrices was conducted to collate and summarize the main findings and themes regarding engagement across data sources.
Results
SAB meetings concluded in November; thus, data analysis is in progress. We will present full findings on engagement, emergent themes, and recommendations for engaging stakeholders with diverse lived experiences. Preliminary findings indicate that engagement increased across meetings as did members’ clarity around their unique contributions to the SAB. Themes from open-ended questions on post-meeting surveys enabled the research team to provide tailored support and integrate SAB members’ suggestions to promote bidirectional partnerships between SAB members and the research team.
Conclusion
Our findings suggest that CBPR is an effective approach to pediatric HPM health equity research. Furthermore, they demonstrate that evaluating engagement in SABs promotes collaborative leadership and provides opportunities for early intervention of barriers to participation.
