Family-Centered Co-Design of a Technology-Facilitated Intervention for Family Caregivers of Critical Care Survivors

Background: Family caregivers play a central role during a Veteran’s critical care (medical care for a life- threatening illness or injury) hospitalization and survivorship. Yet, up to 73% of caregivers experience anxiety and 97% experience depression during a critically ill patient’s hospital stay, compromising their engagement

with the clinical team, their readiness for the survivor journey and can impair patient recovery. Addressing family caregiver needs, including informational and emotional processing, social support and self-care, during key moments early in a family’s crisis may moderate the development of caregiver psychological distress.

Significance/Impact: Supporting family caregivers is important for promoting caregiver well-being, engagement with the clinical team and Veteran outcomes during hospitalization and survivorship. This work addresses several VA priorities. Specifically, VA HRO values support family-centered approaches to care and

the MISSION Act has increased supportive resources for Veteran family caregivers. While formal (paid) caregivers are commonly aware of and access these resources, informal caregivers—such as family caregivers of critically ill Veterans—are a missed yet vulnerable population. VA virtual care technologies (an

HSR&D priority) may be an effective way to provide these caregivers with psychosocial resources to mitigate psychological distress and link them to VA programs that support caregivers and Veterans after hospitalization. In addition to helping family caregivers, this work supports Dr. Blok’s career goal of becoming

a leading nurse researcher and implementation scientist in the VA, with a program of research in Veteran and family-facing intervention and implementation program design. Innovation: This research will create an intervention for family caregivers, with family caregivers, by using visual participatory methods, such as PhotoVoice, to understand support needs, and user-centered design

principles to co-design an intervention with Veteran family caregivers to meet these needs. Drawing on Crisis Theory principles, this work extends beyond providing medical information, to address ‘crisis-solving’ needs, including information processing, emotional processing, social support and self-care, essential elements for

reducing anxiety and distress. Finally, available VA virtual care technologies will be used to deliver intervention components to caregivers in crisis, which is a new application of these resources. Specific Aims: Aim 1. Identify how family caregiver experiences and needs evolve while their critically ill

Veteran is hospitalized. Aim 2. Design a psychosocial support intervention with family caregivers, for family caregivers. Aim 3. Test the feasibility of a psychosocial support intervention for family caregivers. Methodology: In years 1-3, advanced qualitative and participatory research methods will be used to examine

common key moments in the caregiver experience that can lead to distress and engage family caregivers and clinical team members in user-centered design to build psychosocial intervention components to meet caregiver needs during these key moments. In years 4 and 5, a single-arm pilot study of 30 family caregivers

of hospitalized critically ill Veterans will be conducted to test the feasibility and acceptability of the intervention, as well as the tools used to collect quantitative and qualitative outcome measures. Implementation/Next Steps: Dr. Blok will receive mentorship and formal training in (1) advanced qualitative

methods, (2) user-centered design, (3) development and adaptation of surveys, and (4) conducting clinical trials in complex settings. Additionally, she will build upon her work by submitting research proposals to (1) understand the persistence of factors impacting psychological distress after critical care hospitalization and (2)

test the intervention piloted in Aim 3 through an effectiveness-implementation trial. National partners will be engaged throughout the award to provide opportunities to disseminate and utilize her findings.