Authors :
Presenting Author: Sarah Kaden, BA – Dartmouth Health
Tiffany Israel, MSSW – Vanderbilt University
Barbara Jobst, MD, Dr. MED, FAES, FAAN – Dartmouth Health
Maureen Quigley, RN – Dartmouth Health
Lisa Sackett, PhD – Dartmouth Health
Anna Graefe, PhD – Dartmouth Health
Suzanne Lenz, MA, CCRP – Dartmouth Health
Elaine Kiriakopoulos, MD, MPH, MSc – Dartmouth Health
Rationale:
Family care partners play a vital role in the recovery of people with post traumatic epilepsy (PwPTE). The significant burden placed on care partners (CPs) supporting individuals dealing with brain injury, epilepsy, and cognitive impairment is widely acknowledged. Despite this recognition, there is a notable absence of interventions specifically designed to support care partners of PwPTE experiencing cognitive dysfunction. Standard clinic visits typically do not allow for targeted education and provision of wellness tools tailored to CP needs and this lack of support can leave care partners feeling overwhelmed. Integrating CPs into psychoeducation programs presents an opportunity to offer support in a home-based setting. HOme-Based Self-Management and COgnitive Training CHanges Lives (HOBSCOTCH) is an evidence-based telehealth-delivered epilepsy self-management (ESM) program which was adapted for PwPTE and family CPs via a community-engaged approach. Methods:
To shape the adaptation of HOBSCOTCH-PTE (Figure 1), family CPs (n=6) participated in a Community Engagement Studio (CES), a one-time 1.5 hour Zoom meeting led by a neutral facilitator intended to elucidate feedback from individuals with lived experience. Separate CES with PwPTE (n=5) and interdisciplinary experts (n=9) were also conducted. Following the completion of all CES and integration of recommendations, family CPs (n=33) were enrolled in the HOBSCOTCH-PTE randomized controlled clinical trial alongside their loved one with PTE from 3/22-3/25. Demographic characteristics, caregiver burden (Zarit scale), QOL (SF-36), mood (PHQ-9), and knowledge of epilepsy were assessed at baseline (Table 1). Results:
Key themes identified during care partner CES included the need for further education about the relationship between TBI, epilepsy and cognitive dysfunction and explicit acknowledgement of care partner stress and techniques to address that stress. CPs (n=33; 73% female, 76% White 9% Black 6% Asian; 85% not Hispanic, 61% college graduate) baseline data revealed mean burden was mild/moderate (M=28.21, SD=15.16), with 33.3% indicating no/mild, 45.5% mild/moderate, 18.2% moderate/severe, and 3.0% severe burden. All participants scored positive for depression (mild = 16.1%, moderate = 45.2%, moderately severe = 32.2%, severe = 6.5%). QOL (SF-36) scores were moderate, with the mental composite score worse than that of the physical composite score (physical composite scale M=70.29, SD=23.0; mental composite scale M=64.04, SD=23.35). Conclusions:
The HOBSCOTCH-PTE adaptation was coproduced with PwPTE and family care partners and tailored to meet the education and stress management needs expressed. Family care partners enrolled in the HOBSCOTCH-PTE RCT reported at baseline moderate levels of burden, and all experienced mood disturbance, highlighting the need for improved supports. Continued investigation of ESM adaptations addressing care partner needs are required to assess effects on burden, mood, and QOL.
Funding:
Department of Defense W81XWH2110279