Due to funding issues, bed availability, etc., some patients referred to TLC for residential Post Acute Brain Injury Rehabilitation (PABIR) services are placed on a waiting list. While at home, a nursing home, or other non-medical placement, patients can and do deteriorate functionally while waiting for skilled services (i.e., de-conditioning due to inactivity, adoption of maladaptive coping strategies, development of irregular activity schedules, etc.).
These issues often become the focus of rehabilitation, and precious time and resources are used in “undoing” these problems that develop while waiting. As a result, less time and resources are available to address the core issues (i.e., physical, cognitive, emotional/behavioral) that impact community re-integration and life satisfaction. Short and long-term outcomes are affected (see Seale, Caroselli, High, et al. (2002). Brain Injury 16, 955-967). So what can be done for patients as they wait for residential PABIR services? Are activities, strategies, and information available that can be implemented by patients/families to prevent declines in function? How would the rehabilitation process and eventual outcomes be affected if patients/families, for example, received education, engaged in exercise, implemented compensatory strategies, and followed a positive daily routine while waiting for PABIR services?
Patients referred to TLC for comprehensive PABIR services will participate in the usual TLC pre-admission process. This process involves a review of available medical records, an interview with the family and patient (including completing a problem/priority checklist), and a brief cognitive assessment of the patient. Additionally, for this project proposal, patients will be administered the Mayo Portland Adaptability Inventory as a baseline measure, and the family will be provided with a pamphlet developed by the National Institutes of Health (NIH) called, Traumatic Brain Injury – Hope Through Research and other educational materials.
The information obtained during the pre-admission screening will be reviewed with the TLC treatment team and an individualized plan will be developed for the patient and family. All families/patients will be asked to begin using a simple daily activity schedule and memory aid system (examples are attached). Families will also be asked to review the information in the pamphlet provided on the day of screening. Additionally, depending upon presenting needs, the patient will be provided with additional activity suggestions and/or strategies, for example, a home exercise program, a problem-solving strategy, etc., to name but a few. These materials will be provided from a publication by Communication Skill Builders, General Information for Families, or from exercises/strategies developed by the TLC staff. Materials to support the individualized plan will be mailed to the family within one week of the screening. A TLC staff member will follow up after the materials are mailed to the family to ensure the materials were received and understood, and to set up a time/modality for regular contact while the patient/family await admission. On a monthly basis, a TLC staff member will follow-up with the family, inquire as to how the individualized plan is progressing, provide encouragement, and answer any questions. The TLC staff member will continue monthly contact until the patient is admitted to TLC. The family may contact the TLC facility at any time between monthly contacts (within reason) if issues arise.
Upon admission to TLC, the MPAI will be re-administered and a satisfaction survey will be completed regarding the “While You Wait” process.