Me & My Wishes: An Efficacy Trial Using Videos

Utah System of Higher Education (USHE)

Status: Completed

Conditions: Health Communication

Treatments: Behavioral: Me & My Wishes

Study type: Interventional

Funder types: Other; NIH

Identifiers

NCT03861429

IRB_00111417

1R21AG058094 (U.S. NIH Grant/Contract)

Details and patient eligibility

About

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.

Full 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.

Enrollment: 138 patients

Sex: All

Ages: 65+ years old

Volunteers: No Healthy Volunteers

Inclusion and exclusion criteria

Resident 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 Exclusion Criteria:

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

Trial design

Primary purpose: Supportive Care

Allocation: Randomized

Interventional model: Sequential Assignment

Masking: None (Open label)

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138 participants in 2 patient groups

Me & My Wishes Intervention/Group 1

Experimental group

Description:

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

Treatment:

Behavioral: Me & My Wishes

Me & My Wishes Wait-list control/Group 2

Other group

Description:

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.

Treatment:

Behavioral: Me & My Wishes