Advanced Care Planning, Dementia
Conditions
Brief summary
Advance care planning allows people to have their wishes taken into account even in the advanced stages of the persons' condition and at the end of life when the person may be unable to communicate. However, a recent review found an absence of high-quality guidelines for advanced care planning in dementia care. Since few evidence-based resources exist, the investigators propose a study to generate, refine, and pilot test an education information sheet designed to promote advanced care planning among families of persons with dementia.
Detailed description
To determine the feasibility, acceptability and preliminary efficacy of an education information sheet to promote advance care planning among family members of persons with advanced dementia in long-term services and support facilities. Introducing an education information sheet containing prognosis and outcomes will be feasible, acceptable, and increase self-efficacy and do-not-hospitalize decision preferences among family members of persons with advanced dementia.
Interventions
BEHAVIORALtelehealth advance care planning
An education information sheet containing prognosis and outcomes of acute care and intensive treatments
Sponsors
University of Pennsylvania
Oregon Health and Science University
Study design
Allocation
RANDOMIZED
Intervention model
SINGLE_GROUP
Primary purpose
HEALTH_SERVICES_RESEARCH
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Family member of a person with a diagnosis of dementia (any type) * English-speaking family member * Family member of a person with dementia admitted to a nursing home
Exclusion criteria
* Inability to understand/read English * Advance directive already in patient chart
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Feasibility of Information Sheet among Study Population | 6 months | Feasibility of the information sheet is defined as the consent rate of family members who are offered enrollment. This will be calculatd as a percent of family members (number of enrolled participants/number of eligible participants offered enrollment) |
| Acceptibility of Decision Aid Tool | 6 months | Acceptability using an adapted tool (https://decisionaid.ohri.ca/eval\_accept.html) which measures the ratings of comprehensibility of the information sheet among participants in the intervention group. Responses are reported descriptively in terms of proportions responding positively or negatively on each criteria. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Adaptation of Advance Care Planning Engagement Survey | 6 months | Questions adapted from an 82-item questionnaire that measures advance care planning engagement in terms of knowledge, contemplation, self-efficacy and readiness. We include 10 questions from the measure. We used a mean imputation approach. All available data were included to create an average 5-point Likert score. |
| Preparation for Decision-Making Scale | 6 months | Measures perception of the usefulness of a decision support tool in preparing respondent for decision-making. Responses are on a Likert scale of 1-5 with one being not at all and five being a great deal. Items are summed for scoring. A higher score indicates a higher level of perceived helpfulness in preparing for decision-making. |
| Decision Self-efficacy Scale | 6 months | Measures self-confidence or belief in one's abilities in decision making, including shared decision making. Eleven responses are measured on a 0-4 likert scale and a final summed scale is converted to a 0-100 range (scores are summed, divided by 11, then multiplied by 25). A score of zero means low self efficacy and score of 100 means extremely high self efficacy. |
| Knowledge about Dementia | 6 months | Six questions to assess family members' knowledge about dementia were developed for this pilot study. All questions are true/false. Each correct answer will be coded as 1, each incorrect answer will be scored as 0. Higher scores indicate more knowledge. |
| Adaptation of Advance Care Planning Engagement for Surrogates Survey | 6 months | We adapted 9 items from the 17-item Advance Care Planning for Surrogates survey. Response options are on a 5-point Likert scale. We will calculate a summary score, with higher scores indicates a higher level of engagement. |
| Family Member Decision-Making Self-Efficacy Scale | 6 months | Measures family member self-efficacy in medical decision-making on behalf of a loved one. This scale has two versions, one for conscious and one for unconscious loved ones, which we will use accordingly. Thirteen items are measured on a 0-5 Likert scale with 1 being cannot do at all and 5 being certain I can do. Higher scores indicate higher decision making self-efficacy. |
Countries
United States
Outcome results
None listed