Promoting Informed Decision Making Through Advance Care Planning
1 other identifier
interventional
420
1 country
1
Brief Summary
The purpose of this study is to evaluate the application of a best-practice Advance Care Planning (ACP) model for individuals living with dementia in a sample of nursing homes in Northern Ireland
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for not_applicable
1 active site
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
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Study Timeline
Key milestones and dates
First Submitted
Initial submission to the registry
August 6, 2014
CompletedFirst Posted
Study publicly available on registry
August 7, 2014
CompletedPrimary Completion
Last participant's last visit for primary outcome
August 1, 2015
CompletedStudy Completion
Last participant's last visit for all outcomes
August 1, 2016
CompletedAugust 7, 2014
April 1, 2014
August 6, 2014
August 6, 2014
Conditions
Keywords
Outcome Measures
Primary Outcomes (1)
Level of family carer satisfaction in decision making about the care of the resident
Decisional Conflict Scale (DCS). This measures uncertainty and difficulties in the decision making process. The 16 item version measures four domains: a) uncertainty in choosing options; b) unsupported in decision making; c) feeling informed; d) decision is consistent with values
Baseline, up to 2 months
Secondary Outcomes (4)
The level of family carer satisfaction with nursing home care
Baseline up to 2 months
Level of family carer anxiety and depression
Baseline up to 2 months
The comfort of the resident at the end of life
Baseline up to 2 months
Number of unnecessary hospitalisations
Baseline up to 12 months
Study Arms (2)
Intervention
EXPERIMENTALThe intervention will include five key elements: a Project Nurse - ACP facilitator; family education on comfort care at the end of life for individuals with dementia using the 'Comfort Care at the end of life for persons with dementia' booklet; a family meeting with follow-up telephone call; documentation of ACP decisions, and orientation and education directed towards General Practitioners (GPs) and nursing home staff about the intervention.
Usual care
NO INTERVENTIONCare will continue as usual for the nursing home residents
Interventions
A guide for caregivers to provide information on the trajectory of the disease, clinical issues, decision-making processes, and symptom management. The guide is written in a Q\&A form and can help answer frequent family questions.
A nurse will receive training in the 'Respecting Choices Facilitator Curriculum' - an online program consisting of a series of six critical thinking modules designed for healthcare professionals who want to enhance their ACP facilitation skills. Local training resources in Northern Ireland will supplement.
Eligibility Criteria
You may qualify if:
- Family Caregivers
- Family caregivers of a resident who does not have decision making capacity to participate in ACP discussion
- Individuals identified by the nursing home manager as the family member who possess power of attorney for personal care and/or viewed by the nursing home staff as most involved in the care of the resident who does not have decision making capacity.
- Health Care Professionals
- Nursing home managers, registered nursing staff and GPs who:
- are employed, or in the case of GPs, care for residents, in the six nursing homes that were part of the intervention group
- were familiar with the intervention to discuss its strengths and weaknesses in an interview
- are able to speak English as they are required to participate in interviews.
You may not qualify if:
- Family caregivers and health care professionals who are unable to communicate through written and spoken English.
- Family caregivers who has a family resident considered to have the ability to participate in ACP discussions.
Contact the study team to confirm eligibility.
Sponsors & Collaborators
- Queen's University, Belfastlead
- Four Seasons Health Carecollaborator
Study Sites (1)
Four Seasons Health Care -- Nursing Homes
Belfast, United Kingdom
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Kevin Brazil, PhD
Queen's University, Belfast
Central Study Contacts
Study Design
- Study Type
- interventional
- Phase
- not applicable
- Allocation
- RANDOMIZED
- Purpose
- SUPPORTIVE CARE
- Intervention Model
- PARALLEL
- Sponsor Type
- OTHER
- Responsible Party
- PRINCIPAL INVESTIGATOR
- PI Title
- Professor
Study Record Dates
First Submitted
August 6, 2014
First Posted
August 7, 2014
Primary Completion
August 1, 2015
Study Completion
August 1, 2016
Last Updated
August 7, 2014
Record last verified: 2014-04