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Informal care in the last days of life: a data linkage study

Research overview

This study will bring together routinely collected data – from the Census and from death registrations – to better understand the household structure of people shortly before death. Household structure gives an indication of the availability of informal care – the care provided by others, such as family, which for many is an important component in enabling ongoing independent living. This will allow researchers to create a dataset of households shortly before the death of a household member, and to compare 2011 census data with 2001 to see if an increase in the proportion of deaths at home can be explained by changes in the availability of informal care. They will also be able to look at how household structures differ socially and geographically.

 


Benefit

To provide evidence that can inform the development of health and social care services, benefitting those who are caring as well as those in the final days of life.

 


Government departments

Data from National Records of Scotland and health data. 


More about the project

This study will bring together routinely collected data to better understand the household structure of people shortly before death. Household structure provides indication as to the availability of informal care, the care provided by others, such as family, which for many is an important component in enabling ongoing independent living. Analysis will provide evidence that can inform the development of health and social care services, benefitting those who are caring as well as those in the final days of life.

Census data provides information on household structure, indicating whether people lived alone, with a spouse, or otherwise. Linking records from the census to data from death registrations – which includes information on whether or not death occurred at home – will allow the creation of a dataset of households at a point shortly before the death of a household member. The final weeks of life are a dynamic time, and are often marked by periods of hospitalisations, relocations to live with adult children, or moves into nursing homes; other routinely collected data will allow us to take these changes into account.

Analysis will compare 2011, the most recent census, to 2001 to ascertain if an increase in the proportion of deaths at home among people with cancer might be explained by changes in the availability of informal care. Comparison of people who died within a year of the 2011 census to those who lived on will also address questions as to how households changed to enable care. Finally, comparisons will be carried out to establish how household structures differ at the end of life across Scotland socially and geographically.

The work is funded by the Economic and Social Research Council as part of their investment in the development of an Administrative Data Research Centre-Scotland.


Date approved

November 2015 


Lead researcher

Iain Atherton, School of Nursing, Midwifery and Social Care, Edinburgh Napier University


Page last updated: 24/10/2017