ACCESS (Access for Cancer Caregivers for Education and Support for Shared Decision)
Trial Snapshot
- Phase
- Not Applicable
- Status
- Completed
- Enrollment
- 489
- Locations
- 3
- Primary Endpoint
- Change in Generalized Anxiety Disorder- 7
Study Overview
Brief Summary
The project will test the effect of educating and supporting family caregivers of hospice cancer patients on their active participation in shared decision making in the plan of care for their patients.
Detailed Description
This intervention will target education and emotional support to family caregivers of hospice cancer patients for a shared decision making process in the hospice care plan meetings The intervention ACCESS will consist of three components:
1: a Facebook group to provide the education and support; 2. web conferencing for family members into the hospice interdisciplinary care plan meeting 3, a structured shared decision making process to guide the team discussion.
Participants (family caregivers) will be randomly assigned to one of three groups, usual care, Facebook only, and Access.
The specific aims are to:
- Evaluate the effect of access on family caregiver anxiety, pain knowledge and patient pain.
- Evaluate the effect of Facebook groups as educational emotional support for family caregivers
- Assess staff and family caregiver satisfaction with the shared decision making process.
Study Design
- Study Type
- Interventional
- Allocation
- Randomized
- Intervention Model
- Parallel
- Primary Purpose
- Supportive Care
- Masking
- None
Eligibility Criteria
- Ages
- 18 Years to — (Adult, Older Adult)
- Sex
- All
- Accepts Healthy Volunteers
- No
Inclusion Criteria
- •Is caregiving for a patient enrolled in the participating hospice
- •Over 18 years of age
- •Is caregiving for a patient with a diagnosis of cancer
- •Willing to have a Facebook account and post at least 1x per week if in intervention group
Exclusion Criteria
- •No one under the age of 18
- •Is caregiving for a patient enrolled in hospice agencies other than those participating in the study
- •Unwilling to participate in social media
- •Is caregiving for a patient with a diagnosis other than cancer
- •Is caregiving for a patient with a life expectancy of less than 2 weeks
Arms & Interventions
Enhanced Usual Care
The family caregivers in his group will receive usual hospice care which has been enhanced as the staff have been trained in shared decision making.
The family caregivers in this group only participates in the Facebook groups, not in the shared decision making
Intervention: Facebook (Behavioral)
ACCESS
The family caregivers in this group participates in Facebook and web conferencing for shared decision making
Intervention: Facebook (Behavioral)
ACCESS
The family caregivers in this group participates in Facebook and web conferencing for shared decision making
Intervention: ACCESS (Behavioral)
Outcomes
Primary Outcomes
Change in Generalized Anxiety Disorder- 7
Time Frame: Upon enrollment, 14 days, 28 days, 60 days and 90 days
A screening tool to quantify participant's anxiety. The scale ranges from 0-21. A higher score indicates a higher level of anxiety.
Secondary Outcomes
- Perceived Involvement of Care Scale(Upon enrollment, 14 days, 28 days, and 90 days)
- Change in Family Pain Questionnaire - Experience(Upon enrollment and 28 days)
- Change in Family Pain Questionnaire - Knowledge(Upon enrollment and 28 days)
- Zarit Burden Scale(Upon enrollment and 28 days)
- Caregiver Communication Questionnaire (CCCQ)(14 days, 28 days, and 60 days)
- Change in Caregiver Quality of Life(Upon enrollment, 14 days, 28 days, 60 days and 90 days)
- Edmonton Symptom Assessment(Upon enrollment, 14 days, 28 days, 60 days, and 90 days)
- Public Health Questionnaire (PHQ 9)(Upon enrollment, 14 days, 28 days, 60 days, and 90 days)
Investigators
Debra Parker Oliver
Professor
Washington University School of Medicine