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2023 HSR&D/QUERI National Conference Abstract

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4023 — Veteran caregiver needs and recommendations for service improvements 2 years into the COVID-19 pandemic: results from an HSR&D pilot

Lead/Presenter: Luci Leykum ,  Elizabeth Dole Center of Excellence for Veteran and Caregiver Research, South Texas Veterans Health Care System, San Antonio
All Authors: Penney LS (Elizabeth Dole Center of Excellence for Veteran and Caregiver Research, South Texas Veterans Health Care System, San Antonio), Noel PH (Elizabeth Dole Center of Excellence for Veteran and Caregiver Research, South Texas Veterans Health Care System, San Antonio) Hernandez-Swift K (South Texas Veterans Health Care System, San Antonio) Trivedi R (Elizabeth Dole Center of Excellence for Veteran and Caregiver Research, Center for Innovation to Implementation, Palo Alto) Kalvesmaki A (Elizabeth Dole Center of Excellence for Veteran and Caregiver Research, Informatics, Decision-Enhancement and Analytic Sciences Center, Salt Lake City) van Houtven C (Center of Innovation to Accelerate Discovery and Practice Transformation, Durham) Dang S (Elizabeth Dole Center of Excellence for Veteran and Caregiver Research, Miami VA Healthcare System, Miami) Hendricks J (South Texas Veterans Health Care System, San Antonio) Butler J (Elizabeth Dole Center of Excellence for Veteran and Caregiver Research, Informatics, Decision-Enhancement and Analytic Sciences Center, Salt Lake City) Pugh MJ (Elizabeth Dole Center of Excellence for Veteran and Caregiver Research, Informatics, Decision-Enhancement and Analytic Sciences Center, Salt Lake City) Leykum LK (Elizabeth Dole Center of Excellence for Veteran and Caregiver Research, South Texas Veterans Health Care System, San Antonio)

Objectives:
Many of the challenges experienced by informal caregivers have been exacerbated during the COVID-19 pandemic. We sought to identify Veteran caregiver service needs, and their recommendations for VA service improvement.

Methods:
We conducted a mixed methods pilot study in five, regionally diverse VA health care systems from May 2021-June 2022. Adult caregivers of Veterans with at least one activity of daily living need were eligible to participate in a survey, and optional follow-up phone interviews and WebEx focus groups. All data for this analysis were qualitative. Surveys asked participants to identify services they had not received but that would make a big difference in the coming months. During interviews, we asked caregivers to identify the most important issues or services the VA should address to help Veteran caregivers. Focus groups involved a deliberative process whereby groups developed prioritized lists of things the VA should do to better support Veteran caregivers. We used content analysis to describe current needs and rapid qualitative methods to identify themes related to system improvement.

Results:
Veteran caregivers participated in surveys (n = 54), and follow-up interviews (n = 28) and focus groups (n = 3, 10 participants total). Survey participants were on average 60 years old (range 32-83); almost all were women (93%), most identified as White (54%), and 76% were a spouse/partner to their Veteran. Of the 42 survey respondents who answered the question about service needs, 26% reported a need related to caregiver stipend or compensation and 17% said respite care; 19% said they had no current unaddressed needs. Other needs mentioned: food/meal assistance, home health, home modifications, and occupational or physical therapy. Interviewees suggested many ways the VA could improve its support of caregivers: (1) provide assistance navigating and problem-solving VA service offerings, (2) streamline processes to reduce paperwork and care coordination burden for caregivers, (3) implement policies and practices for meaningful inclusive care, (4) strengthen caregiver support program outreach and accessibility, (5) make the VA caregiver stipend program more user friendly, and (6) support opportunities for peer networking and support. Focus group recommendations reinforced most of these suggestions, emphasizing, for example, having well-trained points of contact, having accessible and comprehensive lists of services available, and developing understanding of disparities in access to caregiver supports.

Implications:
Caregivers highlighted current pandemic needs for direct supports for their caregiving role and financial compensation for care work; a minority could not identify any immediate needs. They also recommend improvements in clarity about service availability, more caregiver-friendly processes that reflect caregivers’ diverse situations and needs, and knowledgeable, single points of contact who can help caregivers negotiate sometimes uncertain bureaucratic practices.

Impacts:
Caregivers acknowledged the VA offers many helpful resources to support caregivers, but made specific recommendations which could ease their access and use which would improve their overall care work burden.