Dr. Rebecca Johnson, at Northwestern University’s Feinberg School of Medicine has been approved for a Eugene Washington PCORI Engagement Award by the Patient-Centered Outcomes Research Institute (PCORI) to support the capacity of home care aides (HCAs) to work with their clients to identify patient-centered questions and issues for research.
Dr. Johnson, of Northwestern’s department of medical social sciences, with co-investigator Dr. Margaret Danilovich, of Northwestern’s department of physical therapy and human movement sciences, will lead the engagement project at Northwestern University’s Feinberg School of Medicine. They have subcontracted with a community partner, Help At Home, Inc. for this project.
Home care aides (HCAs) and their older adult clients are not commonly included in research and the consequence of this exclusion is that health care recommendations and decisions are often generalized to this population without research actually conducted with these individuals. The Home Care Aides Patient Centered Education (HAPEER) project proposes 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. This project will involve a collaborative study group of two HCAs and their clients, as well as an informal caregiver. This group will receive advice and guidance from a group of critical friends with expertise in caregiving, health policy, and health promotion interventions. The collaborative study group will develop activities for a research tool box and HCA training materials.
Twenty-four HCAs from Help At Home, Inc. will receive training in patient centered outcomes research and the use of research toolbox 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 toolbox activities will focus on understanding, considering, and expressing views about various health and wellbeing components including pertinent health conditions, personal and environmental factors, and activities and participation roles of importance.
Dr. Johnson notes, “Nearly 90 percent of older adults voice a desire to age in place, but the vast majority require long-term care supports to do so. Older adults receiving home care aide (formal caregiving) assistance are an under-represented group in health research who often feel “invisible” or “unheard”. Our project will help home care aides and their clients communicate about health and aspects of daily living which impact their ability to age in place. Findings will enable researchers to prioritize research topics that older adults have identified and to engage home care aides as knowledgeable partners in research projects.”
The project is part of a portfolio of projects approved for PCORI funding to help develop a skilled community of patients and other stakeholders from across the entire healthcare enterprise and to involve them meaningfully in every aspect of PCORI’s work.