Promoting Informed Decision Making Through Advance Care Planning

Study 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

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

Conditions
-----------------
Dementia, Neurodegenerative Diseases

Intervention / Treatment
-----------------
* Other: 'Comfort Care at the End of Life for Persons with Dementia'
* Other: Project Nurse - ACP Facilitator


Participation Criteria
=================
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.

Ages Eligible for Study
-----------------
Minimum Age: 18 Years

Sexes Eligible for Study
-----------------
All

Accepts Healthy Volunteers
-----------------
No

Study Plan
=================
How is the study designed?
-----------------

Design Details

Primary Purpose: Supportive Care
Allocation: Randomized
Intervention Model: Parallel Assignment


Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Experimental: Intervention<br>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. | Other: 'Comfort Care at the End of Life for Persons with Dementia'<br>* 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.<br>Other: Project Nurse - ACP Facilitator<br>* 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.<br>|
| No Intervention: Usual care<br>Care will continue as usual for the nursing home residents | |

What is the study measuring?
-----------------
Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| 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 Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| The level of family carer satisfaction with nursing home care | 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. | Baseline up to 2 months | 
| Level of family carer anxiety and depression | 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. | Baseline up to 2 months | 
| The comfort of the resident at the end of life | 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. | Baseline up to 2 months | 
| Number of unnecessary hospitalisations | Assessed through the facility care home administrative records | Baseline up to 12 months | 

 Terms related to the study
=================
Keywords Provided by Centre Hospitalier Valida
-----------------
Dementia, Decision-making, Communication, Advance Care Planning