Health information technologies to support management of treatment regimes: Perspectives of veterans and their caregivers in VHA

Health Information Technology (HIT) has vast potential to support patients and informal caregivers in managing health conditions and complex treatment regimens. VA has invested heavily in HIT including an electronic personal health record (PHR) and secure messaging (SM) system. However, uptake depends on alignment of HIT design with users’ views of their needs and practices. While caregivers often provide informational support, little is known about how these activities map onto HIT usage in Veteran-caregiver dyads. We report results on informational support provision and HIT uptake from a qualitative study examining caregiver and Veteran experiences of treatment for Hepatitis C (HCV).

Methods

Semi-structured interviews were conducted with 16 Veteran-caregiver dyads (n=32) from two VAMCs. Interview transcripts were coded line-by-line, with codes developed inductively, and then organized into broader thematic categories. Analysis focused on content relating to informational support and HIT usage.

Results

Caregivers searched online for information related to HCV, its treatment, and unresolved questions from clinical appointments. While appointments, lab results, and medications were tracked electronically and on paper, few dyads used the PHR for these tasks. Despite in-person and phone communication with clinicians, no dyads utilized SM. Nevertheless, Veterans and caregivers desired greater access to clinical information on disease status throughout treatment, were interested in using the PHR, and endorsed granting caregivers access to the Veteran’s PHR.

Conclusions

Informational support provided by caregivers aligns with VAs HIT features. Allowing caregivers’ access is well received by caregivers and Veterans, and should be considered by healthcare systems to better support care.