UCC School of Nursing and Midwifery Annual Report 2020

Catherine McAuley School of Nursing and Midwifery, UCC

Co-designing and adapting an educational intervention for staff and family caregivers for people with advanced dementia as part of the MySupport study

with Dementia’ (van der Steen et al., 2013). Two independent researchers assessed if recommendations were explicitly addressed. Along with the Comfort Care Booklet and as part of mySupport study materials a trifold leaflet in 3 languages (Italian, Czech, English) and a promotional video were designed with our collaborators in the AIIHPC. In addition, the team launched a series of Knowledge Exchange and Dissemination (KED) talks/ workshops to address topics of interest to mySupport team members that will be delivered monthly to support research networking. Facilitator Training A ‘Train-the-Trainer’ approach was initially designed where external facilitators would attend a 4-day training workshop in Queen’s University Belfast and would then go on to train internal facilitators/staff in each nursing home to deliver the family intervention (composed of the provision of the Comfort Care Booklet and a structured family meeting). However, due to the COVID-19 pandemic, this training is now being delivered through an online platform using CANVAS. The training includes courses and manuals which facilitate staff training in the case of social distancing and in the case the intervention can be delivered in person. The training of facilitators in each home is underway. Conference Presentations Hartigan, I et al., (2020). Fit for context: Co-designing a Comfort Care booklet for people with dementia. Engage 12th International Dementia Conference (virtual).

The overall aim of mySupport research study is to adapt, implement and evaluate the Family Carer Decision Support intervention in six countries: United Kingdom, Republic of Ireland, Netherlands, Canada, Czech Republic, and Italy. The educational intervention has been designed to inform family carers about end-of-life care options for people living with advanced dementia. This study is running from 2019-2023. The research over the past 12 months has focused on the development of a Comfort Care Booklet, through engagement with PPI, and the migration of staff training to online due to COVID-19 restrictions. Comfort Care Booklet The Comfort Care Booklet, which forms part of the intervention, has been adapted for use in each of the partner countries to reflect differences in language, design, legislation and care provisions. Each partner country has also adapted a Question Prompt List (inventory of FAQ by families) for use in their respective countries. The development and evaluation process involved: A team of multi-disciplinary health professionals (n=11) with specialist interest in dementia and advance care planning completed content review and editing. Family carers with experience of caring for a person with advanced dementia (n=20 PPI members), participated in activities to adapt the design and content of the booklet including a) completing open questions on the booklet content and design and b) ranking images based on four criteria: informative, reassuring, acceptable and appropriate.

The booklet underwent a mapping exercise against the EAPC White paper ‘Defining Optimal Palliative Care in Older People

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