Post Discharge Assessment of Caregiver Guidance of Patients with Brain Injury Hospitalized in Acute Inpatient Rehabilitation at a Veterans Affairs Medical Center

Objectives: To assess the perception of the guidance received during rehabilitation by caregivers of patients with brain injury to support the post discharge transition to the home environment.
Setting: Brain injury acute rehabilitation hospital unit.
Participants: Caregivers of military active duty servicemembers and veterans (SMVs) who were hospitalized 2017-2022 for acute brain injury rehabilitation.

Design: Caregiver questionnaire and focus group/interview

Methods: Questionnaires were mailed to caregivers of patients with brain injury at least one year post discharge. Questionnaires assessed guidance and education received, and confidence in caregiving. Caregivers were invited to participate in focus groups and thematic analysis was conducted assessing education received during patient’s stay, current educational needs and caregiver needs.
Main Measures: Caregiver guidance; Caregiver Self-Efficacy; Family Needs; Caregiver Zarit-Burden Inventory

Results: Caregivers reported they received information about the brain injury itself such as problems that a brain injury can cause, symptoms and survival. However, the results indicate that caregivers report insufficient guidance to prepare for the future post-discharge. Caregivers had low confidence in using of services, notably online and accessing social benefits. Moreover, caregivers reported they did not receive guidance concerning their own behaviors, emotional health, and life balance. Topics that emerged from focus groups included (1) educational content, (2) prognosis, discharge, and aftercare, and (3) caregiver stress, burden, and self-care.

Conclusion: Targeted efforts to improve organizational health literacy so that caregivers retain and use the guidance they received for post-discharge brain injury care should be considered. Caregiver advocacy, peer support groups, and referring to the printed educational binder may improve the translation of the guidance to implementation of brain injury care during the post-discharge transition.

Key words: acute rehabilitation, caregivers, education, family, service members, traumatic brain injury, acquired brain injury, veterans