Me & My Wishes: An Efficacy Trial Using Videos

NCT ID: NCT03861429

Last Updated: 2024-06-26

Study Results

Results available

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Basic Information

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Recruitment Status

COMPLETED

Clinical Phase

NA

Total Enrollment

138 participants

Study Classification

INTERVENTIONAL

Study Start Date

2019-04-09

Study Completion Date

2021-01-29

Brief Summary

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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

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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.

Conditions

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Health Communication

Study Design

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Allocation Method

RANDOMIZED

Intervention Model

SEQUENTIAL

The investigators propose Stage II efficacy testing of Me \& My Wishes using a randomized wait-list control design that allows the investigators to compare the effects between an early intervention group (Group 1) and a wait-list "control" group (Group 2).Six NHs matched on number of beds and payor mix will be randomly assigned to one of two groups.
Primary Study Purpose

SUPPORTIVE_CARE

Blinding Strategy

NONE

Study Groups

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Me & My Wishes Intervention/Group 1

In Group 1 (early intervention group) NHs, video recording, editing, and viewing will occur within three months of baseline.

Group Type EXPERIMENTAL

Me & My Wishes

Intervention Type BEHAVIORAL

Me \& My Wishes videos communicate residents' preferences via personalized video recorded conversations. Me \& My Wishes are videos of nursing home residents talking about their preferences for care, and include four sections: About Me, Preferences for Today, Preferences for Medical Intervention and End of Life, and Afterthoughts.

Me & My Wishes Wait-list control/Group 2

In 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.

Group Type OTHER

Me & My Wishes

Intervention Type BEHAVIORAL

Me \& My Wishes videos communicate residents' preferences via personalized video recorded conversations. Me \& My Wishes are videos of nursing home residents talking about their preferences for care, and include four sections: About Me, Preferences for Today, Preferences for Medical Intervention and End of Life, and Afterthoughts.

Interventions

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Me & My Wishes

Me \& My Wishes videos communicate residents' preferences via personalized video recorded conversations. Me \& My Wishes are videos of nursing home residents talking about their preferences for care, and include four sections: About Me, Preferences for Today, Preferences for Medical Intervention and End of Life, and Afterthoughts.

Intervention Type BEHAVIORAL

Eligibility Criteria

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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


* 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.


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

Exclusion Criteria

* Limited communication capacity (e.g. aphasia)
* Comatose
* Cognitively intact
* Severe cognitive impairment
Minimum Eligible Age

65 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Brown University

OTHER

Sponsor Role collaborator

National Institute on Aging (NIA)

NIH

Sponsor Role collaborator

University of Utah

OTHER

Sponsor Role lead

Responsible Party

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Gail Towsley

Associate Professor

Responsibility Role PRINCIPAL_INVESTIGATOR

Locations

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Marquis Hope Village Assisted Living

Canby, Oregon, United States

Site Status

Marquis Forest Grove Assisted Living

Forest Grove, Oregon, United States

Site Status

Marquis Forest Grove Post Acute Rehab

Forest Grove, Oregon, United States

Site Status

Regency Gresham Nursing and Rehabilitation Center

Gresham, Oregon, United States

Site Status

Marquis Wilsonville Assisted Living

Wilsonville, Oregon, United States

Site Status

Marquis Wilsonville Post Acute Rehab

Wilsonville, Oregon, United States

Site Status

French Prairie Nursing and Rehab

Woodburn, Oregon, United States

Site Status

Woodland Care Center

Woodland, Washington, United States

Site Status

Countries

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United States

References

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Towsley GL, Neller S, Baier RR, Wong B. Me & My Wishes: Concordance of End-of-Life Preferences between Residents with Dementia, Family, and Staff. J Palliat Med. 2022 Jun;25(6):880-887. doi: 10.1089/jpm.2021.0111. Epub 2021 Dec 28.

Reference Type DERIVED
PMID: 34962157 (View on PubMed)

Provided Documents

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Document Type: Study Protocol

View Document

Document Type: Statistical Analysis Plan

View Document

Document Type: Informed Consent Form

View Document

Other Identifiers

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1R21AG058094

Identifier Type: NIH

Identifier Source: secondary_id

View Link

IRB_00111417

Identifier Type: -

Identifier Source: org_study_id

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