Carer Experience Maps

This project forms part of my PhD research and was presented at ServDes 2016 in Copenhagen.

You can access the full maps, methodology, and the academic paper here.

In the UK, almost 6 million people are unpaid informal carers for an ill, frail, or disabled family member or friend who couldn’t manage without their help.

The vast majority of health and social care in the UK is provided by unpaid informal carers. This saves the UK taxpayer over £119 billion a year - greater than the cost of the entire NHS. Despite this, there is little financial or practical support available to informal carers.

With the help of Newcastle Carers, I interviewed people caring for family members with dementia. I encouraged them to speak openly and honestly about their experiences, from when they first noticed a (typically very minor) deterioration in the patient’s cognition, until the present day.

Particular care was taken to establish which statutory and charitable organisations the carers interacted with during this period. The carers then assessed whether they felt these interactions were positive, negative, or neutral.

During the interviews, I created colour-coded maps to show the interactions between the carer, the patient, and the various organisations involved. These maps helped to visualise not just the carers’ individual experiences, but also the relationships between the organisations, providing vital insights into the often-confusing topography of health and social care in the UK.

The maps express very complex data in an easily understandable format. They visualise how crises build up over time and, crucially, suggest how these could be mitigated through early intervention and planning.
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