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

The Family Carer Decision Support (FCDS) intervention has been designed to inform family carers about end of life care options available to a person living with advanced dementia. The effect of the FCDS was demonstrated through a study that employed a cluster randomized control trial involving 24 care homes located in the United Kingdom. The FCDS intervention demonstrated a statistically significant impact in reducing family carer decision uncertainty on establishing goals of care at the end of life and, improved family carer satisfaction on quality of care. The overarching goal of this proposal is to extend its application transnationally. For the purpose of this study ?care home? is used to refer to a collective institutional setting in which care is provided to older adults on-site 24 hours a day, including on-site or off-site nurses and medical staff. 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. We will employ a multiple case study design where a care home will be the unit of analysis or ?case?. We will enrol 12 care homes that provide care for residents living with dementia in six countries, two care homes per country: United Kingdom (Belfast); Republic of Ireland (Cork County); Netherlands (Leiden); Canada (Hamilton, Montreal); Czech Republic (Prague); Italy (Turin). 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.

Award Date: 17 September 2018
Award Value: €241,067.00
Principal Investigator: Dr Nicola Cornally
Host Institution: University College Cork
Scheme: Joint Programming Initiative in Neurodegenerative Diseases