ACCESS (Access for Cancer Caregivers for Education and Support for Shared Decision Making)

The Washington University

Status: Completed

Conditions: Cancer; Pain

Treatments: Behavioral: Facebook; Behavioral: ACCESS

Study type: Interventional

Funder types: Other; NIH

Identifiers

NCT02929108

2006270

5R01CA203999 (U.S. NIH Grant/Contract)

Details and patient eligibility

About

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.

Full 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:

1. Evaluate the effect of access on family caregiver anxiety, pain knowledge and patient pain.
2. Evaluate the effect of Facebook groups as educational emotional support for family caregivers
3. Assess staff and family caregiver satisfaction with the shared decision making process.

Enrollment: 489 patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

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

Trial design

Primary purpose: Supportive Care

Allocation: Randomized

Interventional model: Parallel Assignment

Masking: None (Open label)

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489 participants in 3 patient groups

Enhanced Usual Care

No Intervention group

Description:

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.

Facebook

Experimental group

Description:

The family caregivers in this group only participates in the Facebook groups, not in the shared decision making

Treatment:

Behavioral: Facebook

ACCESS

Experimental group

Description:

The family caregivers in this group participates in Facebook and web conferencing for shared decision making

Treatment:

Behavioral: Facebook

Behavioral: ACCESS