Reflections on designing a mixed methods research study to evaluate intensive home care packages for people with dementia in the Republic of Ireland
Maria Pierce | Genio
Objectives: A priority area of action of Ireland’s National Dementia Strategy (2014) is ‘Integrated services – Intensive home support’, intended as a way of providing long-term support for people with dementia to remain living well at home and delay admission into residential long-stay care. To address this priority, the HSE is rolling out Intensive Home Care Packages (IHCPs) for 500 people with dementia over three years under the National Dementia Strategy Implementation Programme (NDSIP). A key feature of IHCPs is they are to be tailored to the assessed needs and preferences of the person with dementia and their family members, with the underlying aim of putting the person at the centre of the service. Another key feature is that flexible and innovative approaches should be taken to the delivery of these home supports, but delivered within a standardised framework. Genio has been tasked with designing and undertaking an evaluation of the implementation and impact of the IHCPs to determine the effectiveness of the IHCPs compared to standard care; assess user satisfaction; assess quality of life; and compare costs and cost-effectiveness. This paper describes the evaluation design and offers our reflections on designing an evaluation of a complex and dynamic initiative delivered in real world settings.
Data and methods: The evaluation consists of three key elements: an outcomes, process and costs evaluation, incorporating both quantitative and qualitative data. Data comes from a variety of sources. A Framework of Key Performance Indicators (KPI) covering 7 domains was developed to assist in measuring progress with outcomes for the person with dementia, family members and at organisational level and this KPI data will be available to the evaluation. In addition, quantitative and qualitative data collected through an in-depth study of a sample of people with dementia and their family members will inform the outcomes, process and costs evaluation findings. Comparable data will be collected from a comparison group in areas where the IHCPs are not being delivered. Document analysis and interviews with staff and service providers will also be conducted. The study included a group of people with dementia in the design of the evaluation.
Results: The evaluation commenced in January 2016 and its design is being finalised at the time of writing (March 2016). This paper will offer our reflections on and learning from designing an evaluation of personalised home care supports for people with dementia and their family members when both the initiative and the context within which it is introduced are complex and dynamic. Emerging findings from the process evaluation will also be presented.
Policy implications: IHCPs for people with dementia are a key initiative of the NDSIP and this evaluation will address fundamental questions for policymakers regarding the feasibility of providing long-term care for people with dementia at home, what outcomes are likely for the person and family with this form of care and what are the associated costs. The detailed process evaluation will also provide practical insights and learning for policymakers regarding the implementation of home-based supports.