JMIR Publications

ABSTRACT

Background:

The Rosalynn Carter Institute for Caregivers (RCI) offers evidence-based interventions to promote the health and well-being of caregivers. Trained coaches meet with caregivers regularly to offer education and instruction to improve caregiver health, skill sets, and increase resilience. Two of these interventions, RCI Resources for Enhancing Alzheimer’s Caregiver Health (RCI REACH) and Operation Family Caregiver (OFC), use a set of caregiver-reported questionnaires to monitor caregiver health status and needs.

Objective:

This study describes how web-based assessment questionnaires are currently being used to identify and monitor caregiver status in the RCI REACH and OFC programs, as well as outline perceived enhancements to the web-based system that could support caregiver-coach encounters by directing priorities.

Methods:

This is a qualitative descriptive study. Data were collected via semi-structured interviews with caregivers and coaches within the RCI REACH and OFC programs from July 2020 to October 2020. During the interviews, participants were asked to describe how the assessment questionnaires were used to inform caregiver-coach encounters, perceived usefulness of enhancements to web-based display, and preference for structure of score results. Interviews were recorded, transcribed, and coded using structural and interpretive codes from a structured codebook. Qualitative content analysis was used to identify themes and summarize results.

Results:

A total of 25 caregivers (RCI REACH=13; OFC=12) and 11 coaches (RCI REACH=5; OFC=6) were interviewed. Most caregivers indicated that the assessment questions were relevant for their caregiving experiences. Some caregivers and coaches indicated that they thought the assessment should be administered multiple times throughout the program to evaluate caregiver progress. Overall, caregivers did not want their scores to be compared with other caregivers, and there was heterogeneity in how caregivers preferred to view their results; at the question level or topic level. Coaches were uncertain which and how much of the results from the self-reported questionnaires should be shared with caregivers. Overall, results were very similar regardless of program affiliation (RCI REACH vs. OFC).

Conclusions:

Web-based and procedural enhancements were identified to enrich caregiver-coach encounters. New and enhanced strategies for using the web-based assessment questionnaires to direct priorities in the caregiver-coach encounters included: 1) integrating figures showing caregiver progress at the individual caregiver level; 2) ability to toggle results through different figures focused on individual vs. aggregate results; and 3) support for interpreting scores. Results of this qualitative study drive the next steps for RCI’s web-based platform and expand on current standards for administering self-reported questionnaires in clinical practice settings. Clinical Trial: N/A