Preparing Surrogates of Dementia Patients Through an Advance Care Planning Intervention
- Conditions
- Dementia
- Interventions
- Other: Nurse-facilitated advance care planning intervention
- Registration Number
- NCT06152120
- Lead Sponsor
- The University of Hong Kong
- Brief Summary
The goal of this clinical trial is to evaluate the effects of a nurse-facilitated post-discharge advance care planning intervention with family surrogates of dementia patients on outcomes that reflect the preparedness of surrogates in decision-making.
The main question it aims to answer is, whether the ACP intervention as compared with usual care will increase family surrogates' self-efficacy in surrogate decision-making and reduce their levels of distress, and increase patient comfort and reduce acute healthcare utilization at 2 and 6 months.
Participants will be randomized to ACP intervention vs. usual care.
1. patients of the Intervention group will be assessed on palliative care needs, and surrogates of the Intervention group will participate in 2-3 nurse-led ACP consultations;
2. surrogates of both intervention and control groups will complete 3 surveys at different time points during their participation of the study.
Researchers will compare the intervention group and control group to see any differences in:
1. surrogate preparedness for decision-making,
2. distress of surrogate and satisfaction with the care of loved one with dementia at the end-of-life,
3. enrolment in Community Geriatric Assessment Team end-of-life care program,
4. advanced care program documentation in medical record,
5. patient comfort at end-of-life,
6. hospitalizations in the last 6 months of life.
- Detailed Description
In order to test the ACP interventions that aim to engage surrogates' participation in ACP and improve their preparedness for decision-making rather than on documentation of advance care plans alone, the research team has developed a pilot structured, nurse-facilitated post-discharge ACP intervention with the aim to improve surrogates' preparedness for in-the-moment decision-making.
It does so by incorporating best practices for ACP communication, drawing from prior work of the research team and existing literature, combined with a focus on developing surrogates' self-efficacy for decision-making guided by Bandura's Social Cognitive Theory.
This application aims to test the intervention's effects on surrogate outcomes (decision-making self-efficacy and distress), patient outcomes (patient comfort and healthcare utilization), as well as process outcomes (ACP documentation, end-of-life care discussions between family members, and enrolment in end-of-life care programs).
The research hypotheses to be tested are as follows: the investigators will test whether the ACP intervention as compared with usual care will increase family surrogates' self-efficacy in surrogate decision-making and reduce their levels of distress, and increase patient comfort and reduce acute healthcare utilization at 2 and 6 months.
Recruitment & Eligibility
- Status
- COMPLETED
- Sex
- All
- Target Recruitment
- 58
Not provided
Not provided
Study & Design
- Study Type
- INTERVENTIONAL
- Study Design
- PARALLEL
- Arm && Interventions
Group Intervention Description ACP Intervention arm Nurse-facilitated advance care planning intervention The group which will participate in nurse-facilitated advance care planning intervention.
- Primary Outcome Measures
Name Time Method Modified Family Member Decision-Making Self-efficacy Scale (FDMSE) - Chinese version Baseline, 2-month, 6-month This is a modified 17-item version of the FDMSE, a valid and reliable scale that quantifies a family member's confidence (0-100, where 100 = greatest self-efficacy) in end-of-life care decision-making for a loved one.
Family Distress in Advanced Dementia Scale (FDAD) Dementia Preparedness Subscale - Chinese version Baseline, 2-month, 6-month The FDAD is a validated 21-item scale rated on a 1-5 scale, with higher scores indicating greater family distress. The scale assesses three domains of distress of family members of nursing home residents with dementia: Emotional Distress, Dementia Preparedness, and Clinician Relations. The Chinese version of the FDAD has high content validity (CVI = 0.95). It has good internal consistency (Cronbach's alpha 0.83) and moderate test-retest reliability (ICC = 0.64).
We will use the 5-item Dementia Preparedness subscale to evaluate family distress associated with lack of knowledge of the course of dementia and surrogate medical decision making.
- Secondary Outcome Measures
Name Time Method End-of-life care discussions with other family members Baseline, 2-month, 6-month The number of conversations which the surrogate has with other family members regarding end-of-life care decisions for the patient with advanced dementia.
Enrolment in Community Geriatric Assessment Team End-of-Life (CGAT EOL) care program 2-month, 6-month Occurrence and date of new enrolment in the CGAT EOL care program in the Hospital Authority Clinical Management System.
Comfort Assessment in Dying with Dementia (CAD-EOLD) 2-month, 6-month Measure of common symptoms and conditions to assess comfort of advanced dementia patients across 4 domains: Physical Distress, Emotional Distress, Well Being, and Dying Symptoms.
Documentation of ACP discussions with medical providers Baseline, 2-month, 6-month Information on the date of ACP discussion, type of clinician(s) involved, and care decisions in the Hospital Authority Clinical Management System.
Unplanned hospital admissions and hospitalization days 2-month, 6-month The number of unplanned hospital admissions and hospitalization days in public and private hospitals.
Trial Locations
- Locations (1)
The University of Hong Kong
ðŸ‡ðŸ‡°Hong Kong, Hong Kong