Deliberative Focus Group: An Approach to Engage Community in Addressing Alzheimer's Disease

Background: Research indicates that Alzheimer’s disease (AD) is still largely under-recognized and under-treated in Asian American communities. This study employed a novel method that incorporated a deliberative focus group (DFG) approach to engage community stakeholders in addressing issues affecting AD care in a Korean American (KA) community, one of the largest Asian American sub-population. DFG aims to promote discussion concerning issues of concern by first informing participants about the issues and then facilitating discussion to address the issue. This paper reports the methods and the feasibility, effectiveness, and impact of DFG in raising KA community stakeholders’ awareness about AD care and facilitating their ideas to address the issues affecting AD care in KA community.

Methods: DFG study was the second part of a community-based participatory research that first conducted a cross-sectional survey with a community sample of 266 KAs on issues related to AD and AD care, and used the findings to facilitate DFG discussion with KA community stakeholders. A total of 24 KA stakeholders participated in four separate DFG meetings: 9 community agency staff, 3 county agencies staff, 2 religious leaders, 1 senior housing manager, 2 adult day care staff, 3 health professionals, 2 community volunteers, and 2 caregivers. The participants received basic information about AD and the key findings of the community survey prior to participating in DFG meeting. Each DFG meeting started with a 30-minutes educational presentation on AD and the survey findings, followed by one-hour facilitated deliberative discussion on the key issues identified in the community survey. Using a written evaluation questionnaire, transcription of DFG meetings, and observation notes, this study assessed the feasibility of the DFG process (adherence, acceptance, satisfaction) and the effectiveness and impact of DFG.  

Results: The analysis of the DFG transcript and observation notes showed that all participants actively participated in the discussion, abiding with the ground rules of the DFG (adherence). The results of the evaluation questionnaire indicated that all participants (100%) were satisfied with their overall experience, written materials used, information presented, and group discussion process; and 23 out of 24 participants found the opportunity to have adequate discussion, atmosphere of the DFG, and relevance of the questions posed were acceptable. The content analysis of the open-ended responses revealed that the participants found the two-stage format (education and discussion) was effective in engaging participants in active and open discussion, and raising awareness and knowledge about the issues concerning AD in their community. In regard to the impact of DFG, the participants noted gaining better understanding about issues around AD care and being inspired by the ideas to better serve KA community. This study also led the community agency collaborator to prepare and conduct a full-day AD awareness community event.  

Conclusions and Implications: The findings demonstrate that DFG is a feasible and effective way to raise awareness of community stakeholders about issues affecting their community. Future community-based research that incorporates a DFG approach can provide a platform for community stakeholders to consider and translate evidence into potential community-specific action plans.