The Care-Full Study

An estimated 1.5 million older people have needs beyond state care provision. Unpaid carers, comprising 1 in 5 UK adults, often meet this gap. Though rewarding, caring can also bring emotional, health and financial challenges. Unpaid carers of older people with multiple conditions carry out complex care work, but the current care system neither routinely or proactively identifies, involves, or supports unpaid carers, leading to poorer outcomes for both the unpaid carer and the person cared for.
The Care-Full study will employ participatory workshops and key stakeholder interviews, 
a literature review and repeat surveys and interviews with a longitudinal cohort of unpaid carers (and those they care for) across three research sites in England to meet the study aims and objective. Additionally, a team of three current or recently former unpaid carers, for an older person with multiple long-term conditions, will serve as peer researchers and support the data collection process and the involvement of unpaid carers in workstream 2 (see below).

By developing a workflow from stakeholder 
co-creation of systems maps to data collection and mathematically sophisticated models, we aim to create a paradigm that can be used throughout 
health and social care systems, wherever analysis 
of interactions among complex factors can enable support for decision-making that transcends an immediate situation, producing better outcomes 
for all stakeholders.

This project brings health science researchers and system engineers together with 
unpaid carers, older people living with frailty and multi-morbidities, care advocates and care providers, to translate real-world information into a mathematical model of 
the complex systems and networks of factors around unpaid care.  The objective is for predictive modelling to support carers’ decision-making, according to multiple objectives that consider their holistic well-being and that of the people they care for.  The project aims are to:

1. Understand the key events, trajectories, and outcomes for unpaid carers and the older people they care for.
2. Identify what evidence and data sources can be collected for modelling this system 
of care.
3. Explore how modelling methods drive interventions to support better outcomes for unpaid carers and older people living with multiple conditions.

Work Package 1

Developing understanding of the experiences and current context of unpaid caring and identification of the appropriate tools to measure impact of caregiving.

• Workstream 1: Participatory Systems Mapping (PSM) approach to produce visual map of current context of care.
• Workstream 2: Scoping exercise and feasibility testing to determine acceptability, relevance, and quality of different types of data collection instruments with unpaid carers over time.

Work Package 2

Building prototype systems models to identify links between the experiences and outcomes of unpaid carers and older people living with multi-morbidities to inform optimal service delivery.

Work Package 3

Building the research capacity, infrastructure, and knowledge base to create a national hub for unpaid caregiving research and innovation.