A presentation for the European Conference on Information Literacy 24th-27th September 2018 Oulu, Finland. This presentation reports on a small-scale qualitative study to investigate the information problems and barriers, information needs of non-resident informal carers in the UK, and solutions to these, from the perspective of formal carers.

1. Pamela McKinney p.mckinney@sheffield.ac.uk
Sheila Webber s.webber@sheffield.ac.uk
Exploring the Information World of
Non-Resident Informal Carers

2. Presentation structure
• Background: the care of elderly people in the UK
and the role of the Non-resident Informal Carer
(NIC)
• Study methodology
• Results: a discussion of the particular information
problems faced by the NIC from the perspective of
formal carers
• Conclusion: Implications for Information Literacy

3. Background
• There is an ageing population in the UK, 9.2 million
people are aged 65+ (Office for National Statistics 2013)
• 6 million people in the UK provide unpaid care to
friends and family (Department of Health 2016)
• 76% of carers who provide less than 20 hours of care
each week do not live with the cared-for person (NHS 2014)
• The Care Act (2014) requires local authorities to provide
comprehensive neutral information about care and
support services.
• BUT 51% of carers said they had
difficulty finding the information
they needed (Department of Health 2014)

4. Previous research
• It is difficult for the elderly and their carers to cope with
the information they need, in order to make critical
decisions about care (Katsaliki et al. 2005; Baxter 2017)
• Family members make sense of and manage information
on behalf of elderly people (Palsdottir 2012)
• Carers need information for their own lives to cope with
the financial and logistical issues caused by being a carer
(Milligan 2016)
• Despite a focus on web-based information, people
want personalised advice given face-to-face (Baxter
2017)

5. Study methodology
• Seven semi structured individual or group interviews
(11 people) with formal care providers e.g. charities
• Interviews were transcribed and analysed individually
by the three members of the research team using a
combination of nVivo and manual coding
• Focus on: evidence of information problems and
barriers; reported carer information needs; existing or
desired solutions to information problems and needs;
and specifically needs and problems of NICs
• Burnett & Jaegar’s (2015) Information Worlds theory
and Chatman’s (1999) Small worlds provided the
theoretical background

6. Small worlds
“The social environments in which an inter-
connected group of individuals live and work,
bonded together by common interests, expectations
and behaviours, and often by economic status and
geographic of ‘virtual proximity” (Burnett, Besant &
Chatman 2001)
“small” because it is characterised by day-to-day
activities set within a localised set of social norms

7. Information worlds theory
Micro
Level of the individual
Macro
National, social and
political context
Intermediate
e.g. at
organisational level
Social types
(roles)
Information
value
Information
behaviour
Boundaries
Social norms
Information Behaviour
Burnett & Jaegar (2015)
Physical access
Intellectual
access
Social access

8. Findings

9. Carer journey
• Carers of elderly relatives often don’t self-identify
as carers. The NHS estimate that it takes two years
for people to self-identify as carer.
• As a result they are not motivated to search for
information, and can miss out on opportunities to
get support
• These are exacerbated for the non-resident carer
• The “journey” is not smooth, and many disruptions
e.g. hospital stays change carers roles &
responsibilities

10. A complex information environment
for information provision
• The Health and Social care system is fragmented,
with multiple private and public care agencies and
charities with individual processes & procedures
• This is challenging to come to terms with “I think
people really struggle to navigate both health and
social care systems” (P1)
• 20,000 carers begin and end a carer journey each
year in Sheffield, it is difficult to provide suitable
information for all these carers
• Better provision of information identified as a key
factor: “Information is a really kind of important,
critical factor in terms of, you know, a preventative
approach” (P1)

11. Carer’s interactions with the
information environment
• The carer must learn the insider norms of the small
world of the different agencies they have to interact
with
• There is a tension between desire for family carers to
seek recommendations for services, and the Care Act’s
principles of providing neutral information
• There is a lot of “signposting” activity, so referring
information needs on to a different service, either
because certain support services are not legally able to
offer advice “When carers come to the group,
information about benefits can be something that
people seek. I mean, we obviously can’t do this but we
pass people on”(P5)

12. NICs lack information about the daily
life of the person they care for
• For example: is the cared-for person is eating properly,
taking tablets as prescribed, managing bills effectively,
keeping appointments, or getting on well with formal
(paid carers).
• Information of this sort can be reassuring for the carer
and lack of information is a potential cause of anxiety.
• Carers can also be an important source of information to
support health and care professionals to understand the
needs of the cared-for person. But opportunities to
share are more limited for NICs

13. Confidentiality and privacy issues
• There is the potential for family members to abuse the
trust of the elderly relative and misuse their financial
information
• Non-resident carers may support remotely with tasks
such as banking, bill paying, medication and
appointment scheduling. Without power of attorney,
carers often encounter barriers to accessing
confidential information
• “Carers feel like they’re not informed by health
professionals and they feel like confidentiality is often
used as a barrier”
• Families develop strategies e.g. password books so help
them manage this kind of information problem

14. NICs lack the opportunity to interact
with formal carers
• Interactions help carers develop knowledge of the
Small worlds of the care providers
• Carers value interaction with support staff over “For a
lot of people ……they’d much rather talk to
somebody.”(P3)
• Family carers have an important role in mediating
information exchange between the formal carers and
the elderly person “Which we probably prefer to have,
or I prefer to have, a meeting with somebody being
there as well, because often people’s perceptions of
what they can do and what they do are actually very
different to what the family say.”(P3)
• Family carers like to interact with information
providers, particularly when their information needs
are unclear, or the information is complex

15. The challenges of not being local
• Social care is managed by local authorities in the UK,
there is no national approach
• Different local authorities offer different services and
apply different criteria for accessing support, while
many information and advice services are funded to
support local people and hold local information.
• Carers living at a distance may lack the informal local
networks that can be a valuable source of information
• Carers at a distance have increased work-related issues
• “So certainly things around carer’s leave, dependent
leave, they’re all things that are naturally part of
people’s contracts, but people aren’t necessarily aware
that they exist. They’re not often very prominent in
contracts” (P4)

16. Implications for Information
Literacy
• Defining information needs is difficult, particularly
if non-resident carers don’t identify as carers
• The fragmented nature of social services means
that non-resident carers have to engage with
multiple agencies, and hence multiple “small
worlds”
• Opportunities for information exchange with
support services are fewer

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doi:10.1016/j.lisr.2005.11.005
• Baxter, K. (2016). Self-funders and social care: findings from a scoping review. Research, Policy
and Planning, 31(3), 179-193.
• Burnett, G. and Jaeger, P.T (2015). The theory of information worlds and information behavior. In
A. Spink and J. Heinstrom (Eds). New Directions in Information Behaviour. (pp.161-180). Bingley,
England: Emerald.
• The Care Act. (2014). retrieved from
http://www.legislation.gov.uk/ukpga/2014/23/contents/enacted
• Chatman, E. (1999). A theory of life in the round. Journal of the American Society for Information
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• Department of Health. (2014). Carers strategy: Second national action plan 2014-2016.
https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/368478/Carers
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https://consultations.dh.gov.uk/carers/how-can-we-improve-support-for-carers/
• Katsaliaki, K., Brailsford, S., Browning, D., & Knight, P. (2005). Mapping care pathways for the
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Routledge
• NHS England. (2014). Commitment to carers report. https://www.england.nhs.uk/wp-
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• Pictures are publicly available from the Pexels.com image bank