Technology-enhanced Transitional Palliative Care for Family Caregivers in Rural Settings
Overview
- Phase
- Not Applicable
- Intervention
- Not specified
- Conditions
- Palliative Care
- Sponsor
- Mayo Clinic
- Enrollment
- 384
- Locations
- 1
- Primary Endpoint
- Change in Preparedness for Caregiving Scale Score
- Status
- Completed
- Last Updated
- 2 years ago
Overview
Brief Summary
The purpose of this study is to evaluate the effect and cost of technology-enhanced transitional palliative care on family caregivers who provide care to a loved one after a hospitalization.
Detailed Description
There will be two groups in this randomized control study: technology-enhanced group and usual care group. The total amount of subjects includes both the palliative care recipients and the family caregivers (both the patients and their family caregiver will sign informed consent.) A family caregiver is broadly defined as the person self-identified as the family member or unpaid friend who is the primary informal caregiver for a patient with a terminal illness. The family caregiver may or may not be a member of the patient's nuclear family. For the technology-enhanced group, the study nurse experienced in palliative care will have a visit with the caregiver within the first 24 hours after consent, and have daily visits with the caregiver as long as the patient is still in the hospital. During these visits, the nurse will talk to the caregiver about their own self-care needs, begin transitional care planning, and develop Readiness Plans to anticipate care giving needs the caregiver may have when they discharge from the hospital. For the technology-enhanced group, the caregiver will take an iPad home so that the study team nurse can video chat with them. The iPad will need to be returned upon completion of the study. The study nurse will have a video chat with the caregiver at home within 24-48 hours of discharge from the hospital, and at least weekly for 8 weeks after that. The caregiver and the study nurse may also decide to have other calls on the phone during this time. For the usual care group, doctors and nurses along with input from the Palliative Care service will help the caregiver make a plan for discharge from the hospital and for taking care of the patient upon discharge. Someone from the study team will call the caregiver once a month to check in for the 6 months after the patient discharges from the hospital. Both groups will be asked to complete questionnaires before starting the study, and then up to seven more times over the course of 6 months.
Investigators
Joan M. Griffin
Principal Investigator
Mayo Clinic
Eligibility Criteria
Inclusion Criteria
- •Adult family caregiver of adult patient hospitalized at Mayo Clinic
- •Receives in-hospital palliative care consult
- •Family caregiver lives in a Minnesota or Iowa county that is designated as medically under served or rural area
Exclusion Criteria
- •Family caregivers who live in Rochester, Minnesota. (Rochester, Minnesota is not considered a medically under served or rural area.)
- •Patients with left ventricular assistive devices, documented chronic pain, use of home infusion pain pumps, or documented addictive behaviors.
Outcomes
Primary Outcomes
Change in Preparedness for Caregiving Scale Score
Time Frame: Baseline, 8 weeks
The Preparedness for Caregiving Scale captures how well family caregivers feel they are prepared for the multiple aspects of the caregiving role, using a 4-point response set ranging from 0 ("not at all") to 4 ("very well"). A mean score is calculated; higher scores indicate greater preparation for caregiving.
Secondary Outcomes
- Mean Change in Center for Epidemiological Studies Depression Scale (CESD-10) Score(baseline, 8 weeks)
- Mean Total Out-of-Pocket Expenditures at 6 Months(6 months)
- Change in Caregiver Quality of Life Scale - Cancer (CQOL-C) Score(baseline, 8 weeks)
- Mean Change in Bakas Caregiving Outcomes Scale-Revised (BCOS-R) Score(baseline, 8 weeks)
- Mean Change in Patient Assessment of Chronic Illness Care (PACIC) Score(baseline, 8 weeks)
- Post Discharge Coping Difficulty Scale (PDCDS) Score(2 weeks)
- Change in Communication With Physicians Scale Score(baseline, 8 weeks)