JMIR Publications

ABSTRACT

Background:

Caregiver sustainability requires systems-level changes informed by the people who are most impacted. While inclusive approaches like participatory research or coalition building are instrumental to this effort, a gap exists in adequately including caregivers in processes to drive change. Caregivers, defined in part by their lack of time and bandwidth to engage in additional activities, therefore need innovative means to share stories, discover emerging themes, and identify issues that could be instrumental to future strategies for collective action.

Objective:

This study describes how a distributed ethnographic tool can support caregivers in driving change apart from traditional meeting structures and spaces. The aim of this study was to co-design this tool and to refine and evaluate the usability of this tool.

Methods:

A multi-phase, mixed-methods research design was used to engage a diverse range of caregivers in order to design, test, and improve the usability of a distributed ethnographic tool called SenseMaker®. The multiple phases included: 1) Anecdote Circle to share stories of caregiver experiences; 2) analysis of themes from the Anecdote Circle; 3) development of a web-based distributed ethnography prototype based on those themes; 4) initial functionality test; 5) caregiver usability evaluation in English; 6) tool refinement; 7) caregiver usability evaluation in English and Spanish; 8) tool refinement; and 9) dissemination of the tool.

Results:

SenseMaker® is a platform and distributed ethnography tool that can be designed, developed and customized for a wide range of projects and purposes. Leveraging this technology, a caregiver narrative tool was developed in English and Spanish. The tool included the option to write a short story about an experience that stands out for them as a caregiver or to voice record the story. Caregivers then answered a few questions using “signifiers” which help to interpret each story based on each participant’s unique cultural paradigm. The tool concludes with a few traditional survey questions like demographic information which support comparative analysis of emerging themes about caregiver sustainability across subgroups. Nearly all caregivers that participated in the usability evaluation (N=20) found the tool easy to understand and all participants stated that the time it took to use the tool was acceptable (ie, neutral, agree, strongly agree). Our research identified key areas for improvement leading to improved usability feedback from the first to the second round.

Conclusions:

Our results demonstrate that caregivers had overall positive experiences using a convenient, narrative tool that could be accessed at times and places convenient for individuals with busy lives. These results suggest that a distributed ethnography tool may be useful to data-for-action endeavors when the scale of the sample or individual user needs are not sufficiently addressed though traditional inclusive, participatory methods for narrative research.