ACCESS (Access for Cancer Caregivers to Education and Support for Shared decision-making)
We have designed a pragmatic randomized controlled trial to test an intervention for a population seldom
studied―hospice family caregivers―targeting an identified need (decision-making), and measuring a core set
of caregiver outcomes (anxiety, pain knowledge, and patient pain). This innovative proposal will be the first
shared decision making intervention in the hospice setting. This project proposes an intervention for hospice
family caregivers called ACCESS (Access for Cancer Caregivers to Education and Support for Shared
decision-making). Our preliminary work (R01NR011472) found that it is feasible to use web-based
conferencing to facilitate family caregiver attendance at the hospice care plan meetings. Qualitative feedback
indicates this attendance is beneficial to family members. However, we conclude that simply enabling
attendance at these meetings is not sufficient to change clinical outcomes. For caregivers anxiety to be
changed they need to be prepared for these encounters and actively engaged with the hospice staff in shared
decision-making. There is a critical need to arm Hospice family caregivers with necessary information and a
strengthened their emotional state so they may become decision-makers. We propose using the Facebook
platform to improve emotional support and caregiver knowledge to better prepare caregivers for participation
and decision-making. The proposal is based on a conceptual model that combines collaboration with shared
decision-making. A pragmatic randomized controlled trial (P-RCT) design will randomly assign subjects to one
of three groups: 1) Group 1 will serve as the control and receive usual hospice care enhanced by hospice staff
training in shared decision making, 2) Group 2 is one intervention group and will receive usual care as well as
participate in a private Facebook support group to increase their knowledge and social/emotional support, 3)
Group 3 will receive enhanced usual care, participate in the Facebook support group, and participate in
hospice team meetings with a shared decision making process. We will use qualitative and quantitative
methods in parallel and equal status to measure the efficacy of the intervention. Our overall hypothesis is that
ACCESS will improve hospice cancer family caregiver knowledge (via YouTube videos) and emotional state
(via Facebook), facilitating a shared decision making process, which will result in improved caregiver anxiety
and knowledge and improved pain control for patients. We have three specific aims: 1) Evaluate the effect
of ACCESS on hospice FCGs anxiety, pain knowledge, and patient pain; 2) Evaluate the effect of social
media as a decision aids and decision support for pain management for FCGs; 3) Evaluate the
satisfaction of staff and FCGs with a SDM process for pain management.
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