The information world of non-residential informal carers #NICinfo

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This project aims to map the information worlds of non-residential informal carers (NICs): people with caring responsibilities for someone they do not live with (for example, caring for a mother or father). The NIC may be dealing with information about an older person’s health conditions, finance, care provision, everyday matters such as delivery of meals, benefits …. and having to negotiate with a wide range of public and private sector organisations. Despite requirements for information provision in the United Kingdom’s (UK) 2014 Care Act, carers still have grave problems in finding the information they want (Baxter et al., 2017).

The investigators for this project are Sheila Webber, Pam McKinney and Mary Crowder.

The role of the informal carer is substantial, and growing: in 2017/18 there were 4.5 million informal carers in the UK alone (House of Commons Library (2019). The UK Government estimates that by 2037 there will be approximately double the number of people aged 80 or over, meaning that 1 in 12 of the population (6 million) will be of advanced age. A Department of Health survey (Health and Social Care Information Centre, 2011) gave a detailed analysis of the state of caring in the UK. 12% (around 5 million adults) of people aged 16 or over in England were carers, and half of these (6%) were caring for someone who did not live with them.

It is these non-residential informal carers, and their experiences of finding and using information to support their elderly relatives, that form the focus for this research.

We have started by asking agencies who work with carers to identify what they see as the issues facing carers, and in particular the problems encountered by *non-residential* informal carers. Our participants included workers in charities, independent care agencies, and the social care managers in a City Council (Webber & McKinney, 2020). As well as starting to establish the particular factors affecting people caring at a distance, they were also able to give insights into the bigger picture. This was valuable, as our project is using Information Worlds Theory (Burnett & Jaeger, 2011) to analyse not just the immediate world of the individual carers, but the wider local and national contexts which have so much impact on the carers’ lives.

Our research has identified that there are indeed specific problems facing carers who are not resident with the cared-for person. These include: less contact with health professionals and formal carers of the cared-for person; limited access to information about the day-to-day care needs and welfare of the cared-for person; and lack of local knowledge about support services and infrastructure. Once analysis of this initial study is complete, we plan to move to work with the carers themselves to explore their information worlds further.

References

Baxter, K., Heavey, E. & Birks, Y. (2017). Older self-funders and their information needs. Retrieved from https://www.sscr.nihr.ac.uk/PDF/Findings/RF62.pdf

Burnett, G. & Jaeger, P.T. (2011). The theory of Information Worlds and Information Behaviour. In A. Spink & J. Heinström (Eds.). New directions in Information Behaviour (pp.161-180). Bingley: Emerald Group Publishing.

Heath & Social Care Information Centre. (2011). Survey of carers in households 2009-10. Retrieved from http://democracy.york.gov.uk/documents/s52550/Annex%20B%20-%20Executive%20Summary%20-%20Survey%20of%20Carers%20in%20Households%202009.pdf

House of Commons Library. (2019). Briefing paper: Carers. Retrieved from https://researchbriefings.files.parliament.uk/documents/CBP-7756/CBP-7756.pdf

Webber, S. & McKinney, P. (2020). The information worlds of non-resident informal carers: stakeholder perceptions. Trends in Information Science – The ASIS&ST European Chapter Research Series. 08-10 June 2020. Virtual conference. Slides related to this are at https://www.slideshare.net/sheilawebber/the-information-worlds-of-non-resident-informal-carers-stakeholder-perceptions