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 project will be the first shared decision making intervention in the hospice setting. For caregivers’ anxiety to be changed they need to be prepared for encounters with hospice providers 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.
Family Involvement in Nursing Home Teams to Support Decision-making
Research has found the quality of care of end-of-life care in nursing homes to have many challenges. It has also been documented that family members, especially those living at a distance, want to be involved in the care of their resident and family support can be beneficial to residents. Family members’ involvement in decision-making in the nursing home setting improves outcomes for residents with life-limiting illnesses. This project seeks to facilitate shared decision making (SDM) among family members, residents with life-limiting illnesses (who are not enrolled in hospice), and the nursing home care team. Our overall research question (RQ) asks: To what extent are outcomes for family member and residents with life limiting illnesses associated with SDM via web-conferencing in the nursing home?
Problem-Solving Intervention to Support Caregivers in End of Life Care Settings
The Problem-Solving Intervention to Support Caregivers in End of Life Care Settings (PISCES) is a project that examines the use of technology to deliver a problem solving therapy intervention to hospice caregivers. The study is a three arm randomized clinical trial that examines the effectiveness of the intervention delivered in person to a video based delivery and to an attention control group. The study aims to examine whether problem solving therapy affects caregivers’ quality of life and anxiety, and whether the video delivery is comparable to in person delivery. Cost effectiveness of the intervention and ways to ensure its translation to practice are also investigated as part of this project.
Assessing Caregivers for Team Intervention via Video Encounters
Assessing Caregivers for Team Intervention via Video Encounters (ACTIVE) sought to use web-conferencing technology to allow hospice family caregivers to attend hospice care plan meetings. Using a randomized controlled trial design we recruited 450 caregivers to evaluate the effect of attendance on caregivers understanding of pain management. We found family valued the meetings, felt closer to hospice staff as a result of attending, and felt more confident of the care they provided. Hospice staff valued the input of family members as well.
The next step for ACTIVE is to support caregiver attendance with increased knowledge and emotional support, better preparing them to be active participants and decision makers when the attend the meetings.
Hospice Family Caregiver Survey
Examining Relationships among Patient Symptom Burden, Caregiver Coping, and Caregiver Distress
The Hospice Family Caregiver Survey, supported by a grant from the John A. Hartford Foundation Faculty Scholars Program, was conducted between 2011 and 2013. Researchers involved in the project are currently conducting structural equation modeling of hospice family caregiver survey data to determine relationships among patient symptoms, caregiver coping responses, and caregiver anxiety and depression. Analyses will inform the development of future interventions to support family caregivers who play a vital role in pain and symptom management.