Promoting Informed Decision Making Through Advance Care Planning

Not Applicable

• Conditions: Dementia; Neurodegenerative Diseases
• Interventions: Other: 'Comfort Care at the End of Life for Persons with Dementia'; Other: Project Nurse - ACP Facilitator

• Registration Number: NCT02211287
• Lead Sponsor: Queen's University, Belfast

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

Detailed Description

Not available

Study Timeline

• Status Verified: 2014-04
• Study First Submitted: 2014-08-06
• Study First Submitted QC: 2014-08-06
• Last Update Submitted: 2014-08-06
• Study First Posted: 2014-08-07
• Last Update Posted: 2014-08-07
• Primary Completion: 2015-08
• Study Completion: 2016-08

Recruitment & Eligibility

• Status: UNKNOWN
• Sex: All
• Target Recruitment: 420

Inclusion Criteria

1. 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.

2. 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.

Study & Design

• Study Type: INTERVENTIONAL
• Study Design: PARALLEL

Arm && Interventions

Group	Intervention	Description
Intervention	'Comfort Care at the End of Life for Persons with Dementia'	The 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.
Intervention	Project Nurse - ACP Facilitator	The 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.

Primary Outcome Measures

Name	Time	Method
Level of family carer satisfaction in decision making about the care of the resident	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 Outcome Measures

Name	Time	Method
The level of family carer satisfaction with nursing home care	Baseline up to 2 months	The Family Perception of Care Scale (FPCS). This instrument will represent a global measure on the quality of nursing home care. It is comprised of four subscales: 1) resident care, 2) family support, 3) communication, and 4) rooming. One can investigate both the total and the subscale scores. Family members will also be asked to identify three of the 25 items in the instrument as the highest priorities for providing quality care in the nursing home. Respondents will also be invited to include written comments.
Level of family carer anxiety and depression	Baseline up to 2 months	General Health Questionnaire (GHQ-12). This 12-item instrument is a self-report measure of psychological morbidity. It is widely used in clinical practice, epidemiological research and for research in psychology. The GHQ-12 is often used to assess general distress. It is designed to cover four identifiable elements of distress: anxiety, depression, social impairment, and hypochondriasis.
The comfort of the resident at the end of life	Baseline up to 2 months	Quality of Dying in Long Term Care (QoDLTC). This instrument is a retrospective scale representing psychosocial aspects of quality of dying. The questionnaire contains 11 items with three subscales: personhood (5 items), closure (3 items) and preparatory tasks (3 items). Factor scores (means of item scores within each factor) may be averaged for an overall quality of dying score (range 1 - 5), with a higher score indicating a more positive experience. Individual factor scores may also be used separately.
Number of unnecessary hospitalisations	Baseline up to 12 months	Assessed through the facility care home administrative records

Trial Locations

Locations (1)

Four Seasons Health Care -- Nursing Homes; 🇬🇧 Belfast, United Kingdom