Advanced Dementia, Dementia Caregivers, End of Life Decision Making
Conditions
Keywords
Chinese Americans, feeding options, decision aid, decision coaching
Brief summary
Family caregivers of people with dementia have to decide between tube feeding and hand feeding when persistent eating problems arise. This decision can be difficult for Chinese American dementia caregivers, due to the interplay of culture, potential absence of a patient's advance directive, poor understanding of dementia, and lack of knowledge on the risks and benefits of tube feeding. In this polit study, the principal investigator examines whether a culturally adapted decision aid intervention regarding feeding options named "Chinese version of Making Choices Feeding Options for Patients with Dementia Decision Aid" (CMCFODA) will improve Chinese American caregivers' decision-making about feeding options in patients with moderate or advanced dementia. The proposed study advances the field by providing critical evidence to inform the development and implementation of culturally adapted decision support interventions in end-of-life dementia care.
Interventions
OTHERChinese version of Making Choices Feeding Options for Patients with Dementia Decision Aid
Participants in the treatment group will receive the CMCFODA via zoom meeting or another secure video conferencing platform and an individualized decision coaching.
Sponsors
Yaolin Pei
National Institutes of Health (NIH)
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
21 Years to 99 Years
Healthy volunteers
No
Inclusion criteria
* Age 21 years and older * Self-identify as Chinese * Providing caregiving or involvement in end-of-life care decision-making for older Chinese adults with: a) moderate or advanced dementia, b) feeding difficulties, and c) poor oral intake, eating/swallowing problems, or weight loss
Exclusion criteria
* Dementia patients are a) receiving tube feeding, b) enrolled in hospice care, or 3) have a documented preference against a feeding tube
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Decision conflict | Baseline; One-Month Follow-Up; Three-Month Follow-Up | SURE test for decisional conflict (0-4) |
| Knowledge of feeding options and dementia | Baseline; One-Month Follow-Up; Three-Month Follow-Up | Questions to assess knowledge about feeding options and dementia |
| Expectations of tube feeding | Baseline; One-Month Follow-Up; Three-Month Follow-Up | Questions about understanding differing expectations regarding feeding tube use |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Frequency of communication with other family members and healthcare providers | Baseline; One-Month Follow-Up; Three-Month Follow-Up | Questions to understand caregiver involvement, support, and information flow |
| Preference of feeding option | Baseline; One-Month Follow-Up; Three-Month Follow-Up | Careful hand feeding, tube feeding, or unsure |
| Preparation for decision-making scale (treatment group only) | One-Month Follow-Up; Three-Month Follow-Up | Questions to assess the effect of the intervention by preparing for feeding option decision-making |
| The Feasibility of the CMCFODA study as measured by recruitment rates and the proportion of participants that decline participation. | Enrollment | The feasibility of the CMCFODA study will be measured by the proportion of eligible participants who decline to participate among those who were screened into the study. |
| The Feasibility of the CMCFODA study as measured by participant retention, as indicated by the number of participants lost to follow-up. | Enrollment, One-Month Follow-Up,Three-Month Follow-Up | Participant retention, as an aspect of feasibility, will be measured by the recorded number of participants number lost to follow-up. |
| Acceptability of the decision aid and decision coaching (only for the treatment group) | One Month Follow-Up | We will use developed questions to measure the acceptability of this intervention |
Countries
United States
Contacts
CONTACTYaolin Pei, Ph.D.
Outcome results
None listed