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.
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.
Study Type
INTERVENTIONAL
Allocation
RANDOMIZED
Purpose
SUPPORTIVE_CARE
Masking
NONE
Enrollment
489
Participants will be enrolled in a Secret Facebook group for social support and education
Intervention will have two components. 1. Participants will be enrolled in a Secret Facebook group for social support and education 2. Participants will use web conferencing technology to participate in their interdisciplinary team meeting
Hospice Compassus
Columbia, Missouri, United States
CrossRoads Hospice
Kansas City, Missouri, United States
Barnes Jewish Hospice
St Louis, Missouri, United States
Change in Generalized Anxiety Disorder- 7
A screening tool to quantify participant's anxiety. The scale ranges from 0-21. A higher score indicates a higher level of anxiety.
Time frame: Upon enrollment, 14 days, 28 days, 60 days and 90 days
Change in Family Pain Questionnaire - Experience
A scale which measures caregiver's experience dealing with patient pain. Scale ranges from 0-70. A higher score indicates higher pain experience.
Time frame: Upon enrollment and 28 days
Change in Family Pain Questionnaire - Knowledge
A scale which measures pain knowledge. The scale ranges from 0-90. A higher score indicates a higher knowledge of pain.
Time frame: Upon enrollment and 28 days
Change in Caregiver Quality of Life
Four question scale that measures caregivers quality of life. Scale ranges from 0-40. Higher score indicates higher quality of life.
Time frame: Upon enrollment, 14 days, 28 days, 60 days and 90 days
Perceived Involvement of Care Scale
A scale measuring perceived involvement of care. Scale ranges from 13-65. Higher score indicates higher perceived involvement in care.
Time frame: Upon enrollment, 14 days, 28 days, and 90 days
Public Health Questionnaire (PHQ 9)
A measure of depression. Scale ranges from 0-27. A higher score indicates higher depression.
Time frame: Upon enrollment, 14 days, 28 days, 60 days, and 90 days
Edmonton Symptom Assessment
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A scale that measures various patient symptoms as reported by caregiver such as pain, fatigue, depression, anxiety, appetite, and nausea. Scale ranges from 0-90. A higher score indicates higher degree of symptoms.
Time frame: Upon enrollment, 14 days, 28 days, 60 days, and 90 days
Zarit Burden Scale
A scale that measures the level of burden on caregiver. Scale ranges from 0-28. A higher score indicates greater burden.
Time frame: Upon enrollment and 28 days
Caregiver Communication Questionnaire (CCCQ)
A scale that measures the level of perception of caregiver centered communication by hospice staff. Scale ranges from 30-150. A higher score indicates greater perception of caregiver centered communication.
Time frame: 14 days, 28 days, and 60 days