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2023 HSR&D/QUERI National Conference Abstract

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4102 — Unmet Needs and Perceived Barriers to Accessing Home and Community-Based Services among Caregivers of Veterans of all Eras

Lead/Presenter: Ranak Trivedi,  COIN - Palo Alto
All Authors: Trivedi RanakB (Ci2i, VA Palo Alto Health Care System), Risbud, R.D., Humber, M.B., Lee, T.E., Ngo, V., Desai, S.B., Jacobs, J.C., Yefimova, M., Lorenz, K., Asch, S.M., & Gallagher-Thompson, D. (all at Ci2i, VA Palo Alto Health Care System) on behalf of Elizabeth Dole Center of Excellence for Veteran and Caregiver Research

Caregiver (CG) burden experienced by informal CGs—relatives and friends who support those with medical or mental health conditions—is well known. The Department of Veterans’ Affairs (VA) has developed several programs to offset CG burden, including access to home and community-based services (HCBS), mental health support, and stipends. Yet, many of these services are not utilized by CGs. Through this study, we aimed to describe: the unmet psychosocial and HCBS needs of caregivers, barriers to accessing services, and gaps in available programs.

Between 11/2020 and 12/2021, twenty-three caregivers (62.+/-13.5y; 74.0% women; 47.8% White; 17.4% Hispanic; 91.3% pre-9/11 CG; 65.2% spousal CGs) completed a demographics survey, participated in a 1-hr semi-structured interview, and completed a checklist indicating their awareness, use of, and experience with various VA and non-VA HCBS. Eligible CGs were 18+, supported Veterans seen within the VA Palo Alto Health Care System, provided care for 8+ hr/wk in the prior 6 months, and performed 1+ instrumental activity of daily living. CGs were purposively sampled to be men and women; pre-9/11 and post-9/11; and urban and rural. Thematic analyses are planned.

Participants reported providing 7.3 hours of care daily (SD = 5.5; Range = 1-24). 21 (91.3%) had provided care for 1+ year; 9 (39.1%) had provided care for 5+ yrs. Multiple themes were derived related to individual, interpersonal, and systemic challenges to accessing HCBS. 1) disagreement with Veterans regarding service preferences and needs; 2) lack of awareness of VA and non-VA programs (such as the VA CG Support Program); 3) difficulties locating and coordinating information for HCBS and medical care for CR needs; 4) delays in obtaining services; and e) emotional toll of caregiving on personal health and relationship with the Veteran. Additionally, CGs noted concerns with virtual care visits during the pandemic (e.g. technical difficulties, and lower quality of care compared to in-person visits).

Interviews indicate that CG’s are willing to provide care, but need support in addressing CG-related stress, role conflict, and care coordination. Despite massive investments by the VA in CG supports, CGs report many unmet psychosocial and HCBS needs. CGs have limited awareness of existing resources and suboptimal experiences.

1. Despite the number of VA services that support caregivers, their awareness and access remain low. 2. The VA may need to invest in advertising existing services and develop strategies to match caregivers with available services when needed 3. The VA may need to invest in enhancing mental health and relationship quality for Veterans and caregivers.