Introduction
Scientific background and explanation of rationale
Objectives
Methods
Trial design and allocation
Setting
Eligibility
FCGs
Care recipients
Intervention
Experimental group: technology-enhanced transitional palliative care intervention
Concept | Variables and measures | Time points | Estimated burden |
---|---|---|---|
Sample characteristics | Age, sex/gender, race/ethnicity, marital status, education, relationship of FCG to care recipient, how long the FCG has been providing care to the recipient, any computer/smartphone experience and availability, diagnoses, medications | Baseline | 2–6 min |
Properties of the transition | Mutuality, single items for relationship of FCG/care recipient; caregiving demand | Baseline | 2–6 min |
Transition conditions (facilitators or barriers) | Spiritual/religious beliefs, time available for caregiving (FCG responsibilities and demands), decision-making preference, health literacy, income (single items), FCG support needs, hospital discharge readiness, FCG personal health problems | Baseline | 5–12 min |
Patterns of response (outcomes) | |||
Aim 1 (primary) | Preparedness for caregiving [36], communication skills, CAPACITY measure, satisfaction with care (PACIC) | Baseline, 2 weeks, and 8 weeks | 6–10 min |
Aim 2 (secondary) | CQOLC scale, coping, depression, burden (Bakas Caregiving Outcomes Scale), Palliative Care Outcomes Scale-Carer | Baseline, 2 weeks, and 8 weeks | 17–20 min |
Aim 3 (secondary) | Health care utilization and cost (Ambulatory and Home Care Record) | Monthly, 6 months | 30 min |
Control group: attention control condition
Evaluation
Data collection and management
Baseline and outcomes measures
Demographics, transition properties, and conditions
Primary outcomes
Secondary outcomes
Third party–incurred costs (commercial/Medicare/Medicaid/other/no insurance) | Privately incurred (out-of-pocket) costs | Time costs |
---|---|---|
Home-based services | Home-based services | Caregiver time losses from: |
Ambulatory appointments | Ambulatory appointments | Labor market |
Hospitalization | Hospitalization | Household work |
Emergency department visits | Emergency department visits | Leisure |
Facility care | Facility care | |
Medications | Medications | Employer time loss |
Supplies and equipment | Supplies and equipment | |
Paid housework | ||
Travel expenses | ||
Total third party expenditures | Total out-of-pocket expenditures | Total time cost |