Project Title

Scaling up the Family Carer Decision Support Intervention: A multi- site implementation evaluation

Research Focus

Palliative care; Dementia

Funder & Dates

£291,164.35 awarded 30^th November 2018 from Alzheimer’s Society UK

Principal Investigator or Primary Supervisor (if PhD project)

Prof Kevin Brazil

Co-Investigators or additional supervisors

Dr Gillian Carter (QUB)

Prof Christine Brown-Wilson (QUB)

Dr Nancy Preston (Lancaster University)

Dr Karen Harrison-Dening (Dementia UK)

Dr Josie Dixon (London School of Economics and Political Science)

Dr Catherine Henderson (London School of Economics and Political Science)

Prof Kay De Vries (De Montfort University)

Mrs Jackie Samuell (Alzheimer’s Society)

Mr Kieran Hanna (Alzheimer’s Society)

Research Fellow(s) or PhD Student

Dr Adrienne McCann

Name & Institution of Collaborators

Queen’s University Belfast, School of Nursing and Midwifery, Centre for Chronic Illness and Palliative Care 

Lancaster University, Department of Health Research

De Montfort University, School of Nursing and Midwifery

London School of Economics, Care Policy and Evaluation Centre

Name of External Partner Organisations

Alzheimer’s Society

Description of Project:

Aim; Methods; Expected Outcomes

Aim:

The study aims to develop implementation guidelines for the FCDS intervention by identifying the facilitators, barriers and resources needed to integrate the FCDS intervention into routine care home practice.

Methods:

Our research will employ a multiple case study design where a care home will be the unit of analysis or ‘case’. We will enrol 6 care homes that care for residents living with dementia. Care homes will be balanced by care homes that offer 24-hour nursing care from a qualified nurse (n=3) (nursing care homes) and care homes that offer social care without onsite support from a nurse (n=3). (residential care homes). Three locations will be used with 1 of each care home type in each location: Northern Ireland (Belfast); North West England (Lancashire, Cumbria); Central England (Nottinghamshire, Leicestershire). The team have established relationships with many care home providers who have indicated their willingness to participate in what they see as vital research. In the participating care homes family carers and care home staff identified by care home managers will be invited to participate in the study.

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 outcomes of the implementation.

The development of implementation guidelines that will include; (a) guide to successfully implement the FCDS intervention; (b) staff education material including e-learning resources; (c) establishing a FCDS community of practice across study care homes; (d) family carer informational material including e-learning resources; (e) measures and tools to evaluate uptake and outcome of the FCDS intervention; (f) estimated costs of providing the FCDS intervention.

Expected outcomes of the intervention.

This FCDS will improve resident care by; (a) improved ability for staff to assess resident needs and respond more appropriately; (b) enhanced decision making among family members regarding resident care; (c) improved communication between staff and family carers on goals of care for the resident with dementia; (d) enhanced staff and family carer knowledge, attitudes and behaviour concerning the care of the resident at the end of life; (e) increased evidence of advance care plans; (f) development of open source e-learning resources for use by care homes.

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

Any other relevant information