Through the Caregivers and Veteran Omnibus Health Services Act of 2010, the VHA recognizes informal caregivers as providing essential care for Veterans with a wide array of serious chronic conditions. A national study of informal caregivers identified 66 million caregivers, and caregiver services were valued at $450 billion per year in 2009. To be effective, caregivers must be relatively healthy and not too disabled by their burden. Yet an estimated 30-45% of caregivers meet diagnostic criteria for major depression. Among caregivers of Veterans the burden of caregiving is even greater. In a 2010 national survey, they reported much higher rates of "high burden" caregiving and deleterious outcomes and their desire for skills and support to help with these burdens. The VA Caregiver Support Program (CSP) was formed to address these needs. It commissioned development and testing of Building Better Caregivers (BBC), a 6-week, interactive, online program designed to provide caregivers with skills and self-efficacy to perform effective caregiving and self-care, and with social support from peers and mentoring/modeling by peer-facilitators. Based on positive study findings, CSP began a national rollout of the BBC to all VA facilities in 2013. Since then, BBC has successfully reached only a small proportion of Veteran caregivers, and there has been wide variation across facilities in enrollment rates.
Study objectives are to:
Aim 1: Identify national and regional characteristics of BBC rollout
Aim 2: Identify facility characteristics associated with high versus low caregiver enrollment
Aim 3: Integrate findings, make recommendations, and design hybrid effectiveness-implementation trial to test BBC impact on key caregiver and Veteran sub-groups and strategies for optimizing implementation
We have evaluated the BBC rollout using the PARIHS framework. We performed semi-structured interviews with national (CSP) and regional (VISN lead) key informants, local VA staff (e.g., Caregiver Support Coordinators), and caregivers. Instruments probed for deeper understanding of BBC dissemination and related caregiver support activities. We coded interview data with descriptors for rollout characteristics that were successful versus unsuccessful. Descriptors were grouped to identify common themes. We also performed surveys with local staff and caregivers to enable triangulation with interview data.
We completed surveys and semi-structured interviews with caregivers (n=32) and interviews with local (n=13), regional (n=5), and national (n=4) VA staff involved in BBC rollout. Six percent (n=1265) of VA-registered family caregivers have enrolled in BBC (facility-level range 0% to 37%; median 5%). Among Veteran partners of surveyed caregivers (n=23; 72% response rate), 81% have >= 3 serious chronic conditions (e.g., post-traumatic stress disorder, traumatic brain injury, dementia). All surveyed caregivers reported suffering stress and other negative health effects as a result of becoming caregivers. Among the 43% enrolled in BBC, all would recommend it to other caregivers (even those that had not completed all six weeks of the class). Analysis of qualitative data from interviews with staff and caregivers identified a number of common themes on both strengths and weaknesses of the national BBC rollout:
(1) What has worked well (BBC rollout strengths)
- Positive feedback on BBC program from caregivers-meets goals
- Online interface convenient and easy for caregivers to use
- Successful outreach to some caregiver groups-used stories & multiple contacts, targets were caregivers of post-9/11 era Veterans
- Staff agreement about supportive research evidence, alignment with motivations & role, effective initial training, & useful resources
- Effective relationship between VA national leaders and vendor
(2) What is not working well (aspects that need to be improved upon)
- Some unmet caregiver preferences for class groupings & scheduling
- Ineffective outreach to some caregivers-e.g., of pre-9/11-era Veterans
- User technology not optimized-for outreach and referrals
- Potential partnerships not utilized-with community groups, VA services (primary care, mental health)
- Inadequate data management capabilities-for staff
- Unclear performance metrics-for staff
- Unmet needs for training and mentoring-for staff
Findings will guide design of a hybrid effectiveness-implementation intervention trial that will compare strategies to assess BBC program impact on key caregiver and Veteran sub-groups and test strategies for optimizing BBC dissemination to thousands of Veterans who might benefit from improved family caregiving. They also can inform dissemination strategies for other national, web-based programs.
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