USING PARTICIPATORY DESIGN AND COMMUNITY ENGAGEMENT TO DEVELOP ONLINE CAREGIVER SUPPORT

Abstract

Participatory design is the process used to develop a product in which the people destined to use it play a critical role in the design of it. We adopted a commitment to participatory design and community engagement in the development of an online intervention to support family caregivers to persons with Alzheimer's Disease or Related Dementia (ADRD) called “Time for Living & Caring” (TLC). The TLC intervention is intended to support to ADRD family caregivers by maximizing the benefit of respite. Throughout the initial conceptualization and the later design process, we engaged with a set of key stakeholders, including current and former caregivers, social service providers who were working with ADRD caregivers in the community, and leaders representing diverse local communities. Stakeholder input was initially used as pilot work for a grant proposal. Later, stakeholder input was formalized with the creation of a “Community Advisory Board” that became partners in the development and prototyping of the online tools themselves. These community-engaged practices focused primarily on fostering four types of participatory activities or goals: These included opportunities for each of the Community Advisory Board members 1) to provide their own story (narratives) which allowed us to better understand their personal needs and wants, 2) to create, which allowed them to generate ideas and create specific content for the TLC intervention tools, 3) to prioritize which features to include in the TLC web-based tools, oftentimes requiring them to compromise between ideal content and feasible content, and 4) to contextualize how the tools might be used, which allowed them to provide feedback about how the TLC intervention could be adopted in real life and applicable to diverse individuals and communities. Engaging in a participatory design process will accelerate the timeline and implementation success of the TLC web-delivered intervention. We believe that by seeking and then authentically applying stakeholder input from the earliest stages of conceptualization through the development of the online tools and content, we have enhanced the translation and scalability of the TLC intervention to real world practice and utility.