ACCESS (Access for Cancer Caregivers to Education and Support for Shared decision-making) Abstract 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.
In keeping with NINR?s mission of promoting and improving the health of individuals, families, communities, and populations, this proposal tests an intervention to improve anxiety and knowledge of pain by caregivers of hospice cancer patients, thus improving cancer patient pain. In the ACCESS intervention, web-conferencing technology enables caregivers and patients to participate in bi-weekly hospice interdisciplinary care plan meetings, and social media platforms (Facebook and YouTube) provide information and support outside the team meetings to prepare caregivers to be active decision makers with the hospice team.
