Date of Award

2022

Document Type

Thesis (Ph.D.)

Department or Program

Health Policy and Clinical Practice

First Advisor

Dr. Paul J Barr

Second Advisor

Dr. Martha Bruce

Third Advisor

Dr. Elizabeth Carpenter Song Dr. James O'Malley Dr. J Nicholas Dionne Odom

Abstract

Statement of the Problem: Information from clinic visits is critical to family caregivers, who are the family members or friends who provide at-home care for their loved ones. However, patient’s clinic visits are infrequently attended by caregivers. While methods exist to communicate information from visits to patients, little is known about the methods used to communicate with caregivers, or their effects on caregiver outcomes. I address this gap in this dissertation through three studies.

Methods: A systematic review was used synthesize the methods used to communicate information to family caregivers and their impact on caregivers. A national survey of family caregivers was used to understand the associations between those methods and caregiver outcomes including burden, preparedness, and the positive aspects of caregiving. A randomized controlled pilot trial where patients with ALS and their caregivers were randomized to receive usual care or video recordings of their visits was used to determine the feasibility and acceptability of sharing information with caregivers through recordings.

Results: The systematic review identified two primary methods of communicating with family caregivers: speaking with someone who had been at the visit and using after-visit materials like doctor’s notes or after-visit summaries. Use of these methods was associated with improvements in caregiver preparedness, caregiver confidence, and caregiver engagement in clinic visits. The survey recorded 340 responses and found that speaking with patients was associated with improvements in caregiver preparedness and the positive aspects of caregiving, while using after-visit materials was associated with improvements in preparedness. The clinical trial found that video recording was feasible and acceptable to patients and caregivers and was used by caregivers to remember what was said in the visit.

Conclusions: Additional effort should be made to understand the experiences of caregivers who identify as non-White or Hispanic, as our sample found differences by race and ethnicity that were validated by other large surveys. Larger trials are needed to determine if recording overcomes the limitations of existing methods of communicating with family caregivers, and the downstream effects these methods may have on patients and health systems.

Available for download on Wednesday, September 13, 2023

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