Because the health of ill or disabled veterans is often associated with the intensity, quantity and quality of care provided or coordinated by families, caregiving and caregiver health is gaining considerable attention from Congress, VA policy makers, care providers, and researchers. Previous research on caregiving has shown that care provided by family members can improve patient outcomes, but caregiving has also been shown to result in caregiver distress. Currently, the VA does not have a coordinated agenda to understand the relationship between caregiving and patient outcomes or how supportive programs aimed at caregivers moderate that relationship.
The objective of this work was to: 1) identify and describe across conditions, common caregiver experiences and needs for services, resources, and support; 2) identify strategies to promote innovative caregiving research across conditions; 3) develop a core set of actionable research questions related to caregiving across conditions; and, 4) develop a common conceptual framework that can be used by VA caregiving researchers/implementation experts across conditions or disabilities.
Qualitative methods were used to meet the study objectives. First, focus groups were conducted with caregivers of VA patients to assess caregiver needs. Data were analyzed for key themes. Second, key informants, including QUERI representatives (Chronic Heart Failure, Diabetes, HIV, Mental Health, Polytrauma/Blast Related Injuries, Spinal Cord Injuries, Substance Use Disorders), non-QUERI areas (cancer, dementia, long-term care), methodologists (economist and anthropologist) provided individual input regarding their opinions about research priorities and perceived barriers to caregiver research in their area of expertise. The information collected from these VA panel members was compiled together and synthesized with the findings from the focus groups of caregivers (to provide perspectives from both providers and families).
This compilation was shared back with the key informants, who then via teleconference to evaluate drafts of research barriers, key research questions and a conceptual model. Using consensus methods, the group ranked the most pressing research questions and approved a conceptual model that accurately describes the caregiving experience and the path for research.
Drawing from focus group and key informant data, research priorities include measuring, testing, and implementing high quality, cost-effective and innovative ways to engage, support and train families in the care and treatment of patients while simultaneously caring for their own health and well-being. Meeting these priorities, however, means larger, longer, longitudinal studies that address multiple conditions.
Recommendations to reduce barriers would not only help foster caregiving research, but could improve patient-centered care by improving communication between clinical teams, families and patients.
- Van Houtven CH, Griffin JM. A white paper on the current status of findings from informal caregiving research and recommendations for the VA. Paper presented at: VA Supporting Veterans At Home Conference; 2010 Jul 12; Arlington, VA.