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Me & My Wishes: An Efficacy Trial Using Videos

Not Applicable
Completed
Conditions
Health Communication
Interventions
Behavioral: Me & My Wishes
Registration Number
NCT03861429
Lead Sponsor
University of Utah
Brief Summary

The aim of this study is to determine whether the Me \& My Wishes intervention positively impacts communication of preferences among nursing home residents with dementia and their family caregivers and care team.

Detailed Description

Me \& My Wishes are videos of nursing home residents talking about their preferences for care, including four sections: About Me, Preferences for Today, Preferences for Medical Intervention and End of Life, and Afterthoughts. Knowing what residents want is essential to staff's ability to provide quality care and can inform family caregivers decision making especially in later stages of life as the resident's cognition declines-a time when family caregivers often feel unprepared. Persons with mild to moderate dementia can accurately express their everyday and EOL preferences, however, stereotypes persist about the decision making abilities of people with dementia that often prevent their involvement in conversations about care. The investigators propose to conduct a Stage II efficacy trial of Me \& My Wishes-a novel approach for communicating resident care preferences-by creating videos with 48-54 nursing home residents with mild to moderate dementia and sharing their personalized video with informal (family) and formal (staff) caregivers. The investigators will employ a randomized wait-list control design in which residents in control nursing homes will delay sharing their video. Videos may be viewed two ways: 1) in resident quarterly care conferences; and 2) via a web-based link with resident-identified family members or friends.

Recruitment & Eligibility

Status
COMPLETED
Sex
All
Target Recruitment
138
Inclusion Criteria
  • Identified as having Alzheimer's or related dementia
  • Mild to moderate cognitive impairment (BIMS = 8-15, (MDS C0500) (nursing home residents only)
  • Makes Self Understood = <1 (MDS B0700)/present in medical record
  • Understood By Others = <1 (MDS B0800)/present in medical record
  • Reside at the facility at least 2 weeks identified as a long-term resident
  • Age >65 years
  • Speaks English

Family Inclusion Criteria:

  • Speaks English
  • Willing and able to watch the videos
  • Willing to complete short surveys. Being unable to attend care conference to view the video (e.g. due to distance) will not exclude family from participating.

Staff Inclusion Criteria:

  • Speaks English
  • Willing to watch the videos
  • Willing to complete short surveys

Resident

Read More
Exclusion Criteria
  • Limited communication capacity (e.g. aphasia)
  • Comatose
  • Cognitively intact
  • Severe cognitive impairment
Read More

Study & Design

Study Type
INTERVENTIONAL
Study Design
SEQUENTIAL
Arm && Interventions
GroupInterventionDescription
Me & My Wishes Intervention/Group 1Me & My WishesIn Group 1 (early intervention group) NHs, video recording, editing, and viewing will occur within three months of baseline.
Me & My Wishes Wait-list control/Group 2Me & My WishesIn Group 2 (delayed sharing) NHs, residents will be on a wait-list; after the delayed start, their video will be produced and viewed within three months.
Primary Outcome Measures
NameTimeMethod
Number of Participants With a Documented Discussion of Goals of CareBaseline, time of sharing (3 months from baseline), and 90 days post sharing video

At each specified time point, a chart review was conducted to obtain whether goals of care discussions occurred (change in documentation in medical record, e.g. social work note), yes/no. Reported values indicated residents who had a documented GOC in chart (yes) at any time point.

Goal of Care Conversations encompass two parts. A) some sharing of disease status / prognosis + B) discussion of a choice of goals/treatment decisions.

Examples of Part A include disease understanding, disease state, disease progression, prognosis/life expectancy, documentation that the clinician tried to discuss prognosis but the patient/family refused

Secondary Outcome Measures
NameTimeMethod
Self-efficacy for Communicating PreferencesBaseline, time of sharing (3 months from baseline), and 90 days post sharing video

Confidence in expressing or communicating about resident preferences. Self-efficacy items, range 1-5, higher is more confident.

Trial Locations

Locations (8)

Marquis Wilsonville Assisted Living

🇺🇸

Wilsonville, Oregon, United States

Marquis Hope Village Assisted Living

🇺🇸

Canby, Oregon, United States

Marquis Forest Grove Assisted Living

🇺🇸

Forest Grove, Oregon, United States

Marquis Forest Grove Post Acute Rehab

🇺🇸

Forest Grove, Oregon, United States

Regency Gresham Nursing and Rehabilitation Center

🇺🇸

Gresham, Oregon, United States

Marquis Wilsonville Post Acute Rehab

🇺🇸

Wilsonville, Oregon, United States

French Prairie Nursing and Rehab

🇺🇸

Woodburn, Oregon, United States

Woodland Care Center

🇺🇸

Woodland, Washington, United States

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