In addition to maximizing the resource potential of each organization, both organizations see the importance of clear and frequent communication in program dissemination. Each organization took the time to learn the other’s culture and have an appreciation for how each organization operates. The VA and NCOA meet weekly and work together on every aspect of the project.
Implementation
A rigorous implementation time line was developed by NCOA and VA and achieved the goal of launching the program within 90 days of the kick-off meeting. Key indicators for the success of this program are detailed in the Table.
Both NCOA and VA saw the importance of creating a program that fits well within the overarching CSP and complements its services and resources (Figure 3).
Training and Support
Adequate training and support are essential to maintaining the integrity of this program. A total of 30 facilitators and 5 mentors to support workshops were trained by NCOA, and NCOA screened all facilitator candidates and provided training with ongoing support to all certified and accredited facilitators.
In addition, an online community offers continued support for workshop participants once they have completed the workshop. Graduates can access tools and resources, as well as problem solve, brainstorm, celebrate, and set goals along with other peer graduates via moderated discussion boards.
Preliminary Findings
More than 50% of workshop participants were aged 31 to 50 years, 85% lived with the veteran they were caring for, and 78% were spouses of the care recipient. Seventy-two percent of the veterans being cared for were white, and 93% were male. Nearly 80% of the veterans had PTSD, and more than half had TBI and/or a mental health disorder.
Clinical Indicators
Caregivers in the general population and those caring for veterans consider their caregiving situation stressful. In this implementation, participants are showing a statistically significant reduction in stress when measured at week 1 and week 6 with an average change score of 1.3 on a 10-point scale. Similar reductions in stress were seen in the original Stanford University study 3 months after the workshop had ended.2
Satisfaction
Participant satisfaction was high, averaging 4.5 on a 5-point Likert scale. Caregiver participants reported that what they liked best about the workshop was the shared experience with other caregivers, timing/convenience, giving and receiving help, and goal setting.
One recent caregiver who was caring for her husband remarked “I really enjoyed the workshop. Interacting with others, heartfelt stories of celebration, and frustration. The concern for the whole woman/man; physically and emotionally. I enjoyed the helpful suggestions/encouraging words of the leaders as well. I hope more people take advantage of this program.”
“I like the informal nature and self-paced aspect. We all have crazy lives but I think this was easy to do,” said another caregiver.
“This was a place where you can put out your problem and no one will judge you,” a caregiver explained. “There was respect for each other’s situations. Learning from others’ problem and how others share the solution. I saw how important the caregivers are, taking care of our self first so we can take care of the rest.”
Recruitment
In the 36 months since implementation, > 5,000 referrals were made for BBC, resulting in 2,654 caregivers being assigned to workshops; 75% of caregivers completed a workshop. Nearly half of all workshop graduates elected to join a moderated online community.
Discussion
Internal BBC recruitment data are captured monthly and reported to the Caregiver Support Program for each of the local VAMCs. Although recruitment goals are being met, a consistent referral pattern is not occurring at local VA sites. Not all VA sites are referring participants, and the referrals to BBC at some VA sites have been low in comparison with other higher performing VA sites. The percentage of sites with no referrals is 2%; lower performing sites with less than 20 caregivers referred represent 50% of sites.
A variety of factors contribute to disparities in referrals at different sites. A primary challenge is the increased demands on caregiver support coordinators nationally as they continue to prioritize the enrollment of caregivers into a variety of other programs available within CSP. The CSP office has developed other caregiver resources and tools that may compete with referral to BBC due to the preference of the staff and caregivers. Additional factors may also include no prescribed referral metrics for local sites and variances in local marketing and promotion of BBC. As the partnership between NCOA and the VA continues, additional caregiver referral methods are being explored to facilitate local promotion and marketing to engage caregivers of all eras.
Lessons and Next Steps
This partnership and program implementation have yielded a number of lessons learned and indications for next steps. The most significant lesson also proved to be the biggest success: the program can be embedded into clinical practice. Integrating the referral process into VA staff’s daily operations and depending on them to bring forward viable participants proved highly successful, with the majority of caregiver support coordinators making ≥ 1 referral and 50% of referred caregivers electing to take the workshop.
The VA and NCOA subsequently learned through focus groups that the relationship between the CSC and caregiver is strong, but there is also a need for continual follow-up and—more often than not—these referred caregivers need reminder e-mails to complete the sign-up process. The NCOA and VA also saw a larger proportion of post 9/11 caregivers (70%) recruited to the program compared with other eras (30%). Future recruitment will focus on ways to get caregivers of older era veterans involved with BBC.
Last, the VA and NCOA learned that participants really enjoyed the program. In the future more participant testimonials and stories will be used to spread the word to other caregivers about the program.
Conclusion
Caregivers of veterans face a unique set of challenges. Throughout both the VA pilot and the current partnership with NCOA, BBC is a promising solution for improving the well-being of caregivers of veterans. The success of its integration into clinical practice and participant satisfaction speak to both the quality of the program, as well as the partnership between NCOA and VA. Both NCOA and VA are working to expand its reach and make BBC readily available to as many caregivers of veterans as possible.