Presented by Sheila Webber and Dr Pamela McKinney at the conference Information Science Trends: Health Information Behavior, organised by the European Chapter of ASIS&T, on June 10 2020. The references are at https://docs.google.com/document/d/1ilCIpu7IWsRUhtWinPNuVetlrvkDxBN_lKTaV26yWAU/edit?usp=sharing

1. Sheila Webber and Pamela McKinney
Information School, University of Sheffield, UK
June 2020
The information worlds of Non-
resident Informal Carers
Stakeholder perceptions

2. Structure
• Aim
• Rationale
• Study methodology & theoretical framework
• Findings
• Next steps
Sheila Webber / Pamela McKinney, June 2020

3. Aim
• To illuminate the distinctive elements of the information
worlds (Burnett & Jaeger, 2011) of NICs of elderly people
• Achieved by gaining insights from stakeholders in
organisations working with carers
Definition
Informal care refers to “all non-professional care provided
– by choice or by default – by family members (next of kin),
friends, neighbours or other persons caring for people with
long-term care needs at all ages, usually in private
households” (UNECE, 2019). Non-resident Informal Carers
(NICs) do not live with the cared-for person
Sheila Webber / Pamela McKinney, June 2020

4. Rationale
• It is difficult for the elderly and their carers to cope with the
information they need, in order to make critical decisions
about care(Katsaliaki et al. 2005; Baxter 2017)
• Family members make sense of and manage information on
behalf of elderly people (Palsdottir 2012)
• Despite a focus on web-based information, people want
personalised advice given face-to-face (Baxter 2017)
• Study re: COVID 19 Health information shows older people
still use online sources less than younger people (Office for
National Statistics, 2020)
• Literature mainly focuses on resident carers
• Stimulated by Webber’s own experience as a NIC &
discussion with others in her position
Sheila Webber / Pamela McKinney, June 2020

5. Methodology
• Semi structured individual or group interviews with 11 people in
7 formal care providers in Sheffield e.g. charities, independent
care agencies, social care managers in the City Council
• Stakeholders approached
• initial group to get broad outsider perspective on whether there were
distinctive issues associated with non-resident caring
• Better perspective on macro & intermediate issues
• Interviews transcribed & analysed individually by the 3
research team members (McKinney, Webber & Mary Crowder):
nVivo and manual coding
• Burnett & Jaegar’s (2015) Information Worlds theory and
Chatman’s (1999) Small worlds provided the theoretical
framework Sheila Webber / Pamela McKinney, June 2020

6. 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
SheilaWebber/PamelaMcKinney,June2020

7. The macro environment
The intermediate environment
The provision of social care in the UK: policy, outcomes
and measures of effectiveness of information provision
Provision of social care and information about social
care in the Sheffield city local authority: Services,
agencies, policies
The micro environment
The experience of providing
information to carers by agencies in
Sheffield. The small worlds of individual
agencies and the carers they support
Sheila Webber / Pamela McKinney, June 2020

8. • Medical care is national (NHS) but variations
between home nations (England/Scotland/Wales/
N. Ireland)
• Social care is devolved to local authorities and
not integrated with NHS provision
• Although NHS nationalised: policy driven by a free
market ethos (e.g. aiming at a competitive market in
care home provision)
Policy background
FinnBjørklid;KjetilRee/Publicdomain
Sheila Webber / Pamela McKinney, June 2020

9. • 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)
• Sheffield is ranked 144th nationally for how easy carers report
being able to find information as part of the UK Adult Social
Care Outcome Framework
Information Policy
Sheila Webber / Pamela McKinney, June 2020

10. • Ageing population in the UK, 9.2 million people
aged 65+ (Office for National Statistics 2013): this is seen as a
problem
• 4.5 million informal carers in the UK (House of Commons Library,
2019)
• 76% of carers who provide less than 20 hours of
care each week do not live with the cared-for
person(NHS 2014)
Demographics
Zomer,Mhttps://www.pexels.com/photo/action-
adult-affection-eldery-339620/
Sheila Webber / Pamela McKinney, June 2020

11. The macro environment
The intermediate environment
The provision of social care in the UK: policy, outcomes
and measures of effectiveness of information provision
Provision of social care and information about social
care in the Sheffield city local authority: Services,
agencies, policies
The micro environment
The experience of providing
information to carers by agencies in
Sheffield. The small worlds of individual
agencies and the carers they support
Sheila Webber / Pamela McKinney, June 2020

12. • 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)
• 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 (e.g. because have to be
“neutral” or outside their remit)
“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)
Sheila Webber / Pamela McKinney, June 2020

13. • 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)
• Different local authorities offer different services and apply
different criteria for accessing support: the situation in a
NIC’s own area is likely to be different than that in the
cared-for person’s region
“I think it can be difficult for people doing things when
they're in a different town because they won't necessarily
know anything about the kind of services in the town the
person who's being cared for lives in.”(P5)
Sheila Webber / Pamela McKinney, June 2020

14. The macro environment
The intermediate environment
The provision of social care in the UK: policy, outcomes
and measures of effectiveness of information provision
Provision of social care and information about social
care in the Sheffield city local authority: Services,
agencies, policies
The micro environment
The experience of providing
information to carers by agencies in
Sheffield. The small worlds of individual
agencies and the carers they support
Sheila Webber / Pamela McKinney, June 2020

15. • The carer must learn the insider norms of the Small Worlds
of the different agencies they have to interact with, but
• NICs have less contact with health professionals and formal
carers of the cared-for person than do resident carers, and
thus less opportunity to seek, receive and share relevant
health-related information & get to know the Small Worlds
of the care providers
• NICs have limited access to information about day-to-day
care needs and welfare of the cared-for person themselves
• This information is also useful for formal carers “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)
Less access to the Small Worlds of
care providers and cared-for person
Sheila Webber / Pamela McKinney, June 2020

16. • NICs’ lack of local knowledge means that NICs have less
knowledge of local support services and infrastructure
• Many information and advice services are funded to support
only local people – so inaccessible to NICs
• Carers living at a distance may lack the informal local
networks that can be a valuable source of information
“And often, yeah, carers can help each other, sharing this sort of thing.
They also share information about the services that people receive, so
things about homecare”
These problems have been increased by
COVID19 and lockdown
Less access to formal and informal
networks
Sheila Webber / Pamela McKinney, June 2020

17. Next steps
• We want to carry out case studies, focusing on NICs’
experience
• Would be interested in connecting with researchers
engaged (or wanting to engage) in similar studies
Sheila Webber / Pamela McKinney, June 2020

18. Sheila Webber
Information School
University of Sheffield
s.webber@sheffield.ac.uk
Twitter: @sheilayoshikawa
http://information-literacy.blogspot.com/
http://www.slideshare.net/sheilawebber/
Dr Pamela McKinney
Information School
University of Sheffield
p.mckinney@sheffield.ac.uk
Twitter: @ischoolpam
References at
https://docs.google.com/document/d/1ilCIpu7IWsRUhtWinPNuVetlrvkDx
BN_lKTaV26yWAU/edit?usp=sharing
Title picture by Sheila Webber, taken in Second Life, a trademark of Linden Labs