Project Summary

Background: Currently, over 1.45 million people receive home- and community-based care services (HCBS) through Medicaid waiver programs in the United States. A chief feature of Medicaid HCBS is the use of home care aides (HCAs) (sometimes referred to as personal care aides/attendants) to provide assistance with ADLs and IADLs. Two million HCAs are currently employed nationwide, and this is one of the fastest growing occupations; it is anticipated to grow 50 percent by 2022 to meet the needs of our aging society.

Problem: Despite the large numbers of users of Medicaid HCBS and the projected growth in both HCAs and older adult consumers of their care, it is concerning that older adult clients and HCAs remain excluded from research. The consequence of this exclusion is that healthcare recommendations and decisions are often generalized to this population while there is limited research actually conducted with these individuals.

Solution: We propose to resolve this problem by training HCAs to be research aware and engage with their clients about patient-centered care and issues that have the potential to improve quality of life. In the process, HCAs will be provided with tools to better facilitate communication with their clients.

Objectives: The overall aim of HAPEER is to build the capacity of HCAs to work with their clients to identify patient-centered questions and issues for research. To that end, researchers at Northwestern University have subcontracted with Help at Home LLC for this project.

Methods: We will first assemble our stakeholders: a collaborative study group of two HCAs and their patients/clients, as well as an informal caregiver. This group will receive advice and guidance from a group of people with expertise in caregiving, health policy, and health promotion interventions. Stakeholders include HCBS administrators, a patient engagement leader, and university researchers. They will collaboratively develop activities for a research tool box and HCA training materials. Twenty-four HCAs will receive training in patient-centered outcomes research, community-based research certification, and the use of research tool box activities. Following training, HCAs will work through the research tool box activities during their usual care visits in their client’s home over a five-week interval. Research tool box activities will focus on understanding, considering, and expressing views about various health and well-being components including pertinent health conditions, personal and environmental factors, and activities and participation roles of importance.

Projected Outcomes: All participating HCAs will receive community-based research certification, materials to help communicate with their clients about patient-centered issues that have the potential to improve quality of life, and be offered the option of a personalized plan for continuing their engagement with research. Our collaborative study group and other participants will plan and host a public symposium at Northwestern University to share project findings and present participant testimonials to give a voice to the experience of persons engaged in this project. Tangible outputs presented at the symposium will include training materials, the contents of the research tool box, and testimonials from participants. Attendees will also have the opportunity to discuss the implications of project findings for future research.

Project Information

Rebecca Johnson, MS, PhD
Margaret Danilovich, PhD
Northwestern University

Key Dates

August 2018


Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: April 8, 2024