Me & My Wishes: An Efficacy Trial of Long Term Care Residents With Alzheimer's Using Videos to Communicate Care Preferences With Caregivers
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 138
- 试验地点
- 16
- 主要终点
- Number of Participants With a Documented Discussion of Goals of Care
研究概览
简要总结
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.
详细描述
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.
研究设计
- 研究类型
- Interventional
- 分配方式
- Randomized
- 干预模型
- Sequential
- 主要目的
- Supportive Care
- 盲法
- None
入排标准
- 年龄范围
- 65 Years 至 —(Older Adult)
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •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
排除标准
- •Limited communication capacity (e.g. aphasia)
- •Cognitively intact
- •Severe cognitive impairment
结局指标
主要结局
Number of Participants With a Documented Discussion of Goals of Care
时间窗: Baseline, 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
次要结局
- Self-efficacy for Communicating Preferences(Baseline, time of sharing (3 months from baseline), and 90 days post sharing video)
研究者
Gail Towsley
Associate Professor
University of Utah
