Promoting Informed Decision Making and Effective Communication Through Advance Care Planning for People With Dementia and Their Family Carers

Queen's University, Belfast1 site in 1 country420 target enrollmentAugust 7, 2014

ConditionsDementia Neurodegenerative Diseases

Overview

Phase: Not Applicable
Intervention: Not specified
Conditions: Dementia
Sponsor: Queen's University, Belfast
Enrollment: 420
Locations: 1
Primary Endpoint: Level of family carer satisfaction in decision making about the care of the resident
Last Updated: 11 years ago

Overview Investigators Eligibility Criteria Outcomes Sites Similar Trials

Overview

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

Registry

clinicaltrials.gov

Start Date

August 7, 2014

End Date

August 2016

Last Updated

11 years ago

Study Type

Interventional

Study Design

Parallel

Sex

All

Investigators

Sponsor

Queen's University, Belfast

Responsible Party

Principal Investigator

Kevin Brazil

Professor

Queen's University, Belfast

Eligibility Criteria

Inclusion Criteria

•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.

Exclusion Criteria

•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.

Outcomes

Primary Outcomes

Level of family carer satisfaction in decision making about the care of the resident

Time Frame: Baseline, up to 2 months

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

Secondary Outcomes

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)