Project Title

Scaling up the Family Carer Decision Support Intervention: A transnational effectiveness-implementation evaluation

Research Focus

Palliative Care; Dementia

Funder & Dates

€1, 428, 798 awarded from EU Joint Programme – Neurodegenerative Disease Research (JPND) 1st May 2019

Principal Investigator or Primary Supervisor (if PhD project)

Prof Kevin Brazil QUB

Co-Investigators or additional supervisors

Sharon Kaasalainen, McMaster University

Jenny van der Steen, Leiden University Medical Centre

Nicola Cornally, University College Cork

Martin Loucka, Center for Palliative Care

Karen Harrison-Dening, Dementia UK

Paola di Gulio, University of Turin

Minke Kooistra, Alzheimer Nederland

Mary Schulz, Alzheimer Society of Canada

Sharon Baxter, Canadian Hospice Palliative Care Association

Karen Charnley, All Ireland Institute of Hospice and Palliative Care;

Iva Holmerova, Charles University & Alzheimer Europe

Research Fellow(s) or PhD Student

Research Assistant: Ms Sophie Morris

Name & Institution of Collaborators

Sharon Kaasalainen, McMaster University

Jenny van der Steen, Leiden University Medical Centre

Nicola Cornally, University College Cork

Martin Loucka, Center for Palliative Care

Karen Harrison-Dening, Dementia UK

Paola di Gulio, University of Turin

Minke Kooistra, Alzheimer Nederland

Mary Schulz, Alzheimer Society of Canada

Sharon Baxter, Canadian Hospice Palliative Care Association

Karen Charnley, All Ireland Institute of Hospice and Palliative Care;

Iva Holmerova, Charles University & Alzheimer Europe

Name of External Partner Organisations

JPND Research

Description of Project:

Aim; Methods; Expected Outcomes

Aim:

The aims of this research are: 1) adapt the application of the FCDS for use in different countries; 2) identify optimal conditions for the successful implementation of the FCDS intervention; and, 3) assess outcomes associated with the FCDS intervention.

Methods:

The project addresses the above objectives through a program comprising eight work packages (WPs). The core goal of the project is implementing the FCDS intervention in six countries (Canada, United Kingdom, Republic of Ireland, Netherlands, Czech Republic, and Italy).

WP1: Management and coordination (United Kingdom) 1– 36 months. Objective: establish a transnational consortium for the effective delivery of the project.

WP2: Knowledge exchange and communication (Republic of Ireland) 1-36 months. Objectives: 1) develop and implement a knowledge exchange and communication plan; 2) support and develop young researcher’s in dementia and palliative care research.

WP3: Patient, public involvement (PPI) and evaluation (Canada) 1 – 36 months. Objective: engage family carers, care home residents and advocacy organizations in all stages of the project.

WP4: Develop staff training, web based e-resources (United Kingdom). 1- 12 months. Objective: develop care home staff training module incorporating e-learning resources in English, Dutch and Czech.

WP5: Preparation & standardisation of the FCDS (Netherlands) 1-12 months. Objective: preparation FCDS intervention materials to be delivered across partner countries.

WP6: Implementation and evaluation of the FCDS intervention (all partner countries). Months 13 - 25. Objectives: 1) identify the facilitators and barriers to implementing the FCDS intervention into care homes; 2) identify the resource use and costs associated with the successful implementation of the FCDS intervention in care homes; 3) assess the impact of the FCDS intervention on persons living with dementia, family carers and care home staff.

Our research will employ a multiple case study design where a care home will be the unit of analysis or ‘case’. We will enroll 12 care homes that care for residents identified as living with advanced dementia who lack decisional capacity to participate in discussions involving goals of care.

All family carers who have a family member identified as having dementia will be eligible to participate in the intervention. Nursing home managers, resident chart review and consultation with family members will confirm capacity status of the resident. Residents assessed as not having decisional capacity to participate in advance care planning discussion will be assessed by the nursing home staff on the Functional Assessment Staging Test to measure cognitive impairment. Individuals identified by the care home staff as the primary family carers will be identified to be invited to participate in the FCDS intervention.

Family Care Decision Support (FCDS) Intervention

The FCDS intervention consists of two key elements:

1. The booklet, “Comfort Care at the End of Life for persons with Alzheimer’s Disease or other Degenerative Diseases of the Brain”

2. A structured family care conference (FCC) including a trained care home staff person, family carer(s) and significant others as identified by family carer(s). The FCC will be held in the care home within 3 months of staff training on FCC procedures.

The aim of the ‘Comfort Care” booklet is to provide family carers with information so that they can better understand the risks and benefits of care options and the opportunity to actively participate in decision-making. It provides information on the trajectory of the disease, clinical issues, decision- making processes, and symptom management. The booklet has shown evidence of high levels of acceptability among family carers and healthcare providers^22-25.

The structure of the one-hour FCC (preparing, conducting, documentation and follow-up) is based on clinical practice guidelines developed for conducting family meetings. In the FCC the designated staff person in the care home will review and discuss the contents of the booklet with family participant(s) facilitating awareness of comfort care practices at the end of life. FCC participants will determine the option of follow-up meetings. E-learning resources to the FCDS intervention will be developed and piloted prior to implementation in the case study sites.

Expected outcomes:

Expected project outcomes will include; (a) development of guidelines to facilitate transnational use of the FCDS within care homes; (b) staff education material including web learning resources; (c) family carer informational material including web learning resources; (d) measures and tools to evaluate the uptake and outcome of the FCDS intervention; (e) establish a transnational FCDS community of practice across study care homes; (f) estimated costs of providing the FCDS intervention; (g) evidence of enhancing decision making among family members regarding resident care and satisfaction with care.

Add links/URLs to external pages, e.g., study webpage, reports, publications etc.

http://mysupportstudy.eu/

Any other relevant information