1. Supporting young people's
health information needs.
Dr Barbara Sen, University of Sheffield
Dr Hannah Spring, York St John University

2. Overview of our previous work on the
relationship between information and
coping
Discussion on the information-coping
trajectory and health literacy
Recommendations for future work
Outline of today’s presentation

3. This paper considers the information support
needed for young people coping with long
term illness
It seeks to understand the relationship
between health information literacy and their
ability to cope with illness.
Qualitative study of the narratives of 30 young
people aged between 16-29 years.
Background

4. Objectives:
To identify the information behaviour of young
people affected by long term illness, expressed and
evidenced by the young people themselves, relating
to acquiring, communicating and sharing knowledge
and information
To map such information behaviour onto contextual
factors affecting the young people, in order to build a
model of the role played by information and
knowledge within the coping context
Builds on a previous paper Sen &
Spring (2013)

5. Open data available on the Youthealthtalk
website http://www.youthhealthtalk.org/
Used an information lens to focus on data
analysis
The approach of Situational Analysis, Chicago
School of Symbolic Interactionism (Clarke,
2003)
‘Mapping techniques’ to elucidate the data
Young people’s experience of coping
with chronic illness

6. Mapping techniques
1. Situational map - considers the major
human, non-human, discursive and other
elements of concern and the relationships.
Messy and ordered maps
2. Social worlds/arenas map - plots the
actors, key non-human elements and the
arena(s) of commitment and engagement
3. Positional map - plot the major positions
taken noting discursive
variations, difference, conflict and controversy

7. Who and what are in this situation?
Who and what matters in this situation?
What is going on in this situation?
What elements make a difference in this situation?
What ideas, concepts, ideologies, discussion, symbols,
sites of debates, cultural issues, discussions, symbols
matter in this situation?
What seems present but is unarticulated?
Key questions in the analytical
mapping process

8. Messy Situational and Relational
Maps
Young people coping
with long term health
condition
Relationships

9. Political/Economic Elements
Not enough people
Funding issues
Need for research
Discursive Constructions of Non-Human Actants
Information as a form of social support
Communication channels as enablers for accessing support
Constructions of the health condition
Temporal Elements
Time needed to talk
Too much time taken to be given information
Wasted time – through lost results
Maturing of the young person
Socio-cultural /Symbolic Elements
Young person needing to fit in – social acceptance
Young people in society
Illness
Major Issues/Debates (Usually Contested)
Importance of communication
Importance of being informed
Importance of relationships and needing support
Importance of healthy lifestyle
Related Discourses (Historical Narrative, and/or Visual)
Discourses on individualism
Discourses on health and illness
Discourses on information, knowledge and communication
Discourses on lifestyle
Discourses about relationships and support
Other Kinds of Elements
Personal attitudes and emotions
Conflict
Spatial Elements
Personal space
Social spaces
Situational ordered maps – example
elements from the ordered map

10. Social Worlds Arenas Map

11. Positional Map

12. An information-coping trajectory model that
maps the relationship between information
and the young people’s ability to cope as they
learn to manage their health conditions.
The information coping trajectory
model identifies five positions on the ‘map’.
Outcome from the data

13. Young person on diagnosis, coping with the shock of
the new situation experiencing information deficiency.
“I didn’t really know much about it [diabetes] at the time
[diagnosis].” [Andrew, 24yrs]
“I wasn’t ever offered counseling or anything like that.” [Annette,
19yrs]
“I was very young, very believing…I was lacking confidence it was
because I just didn’t have all the knowledge.” [Clint, 26 yrs]
Position 1 – Information Deficiency

14. Young person in early stages of illness trying to understand their
information needs and learning to cope often feeling ill informed.
“I wasn’t actually given that much information about the condition at the time…But I
know now that there was a lot of information that, that I should have received, but I
didn’t.”[Catherine, 29 yrs]
”Because sometimes doctors use all the medical terms and terminology and sometimes
even the parents don’t know what they’re talking about. So it’s like use words that are
every day.” [James, 21yrs]
“They [doctors] have explained it[ the illness] to a certain extent but they haven’t gone
into any great detail….I’ve got questions that need answers and they haven’t answered
them… I haven’t asked… Because I feel stupid.” [Sarah, 29yrs]
Position 2 – Ill Informed

15. Young person learning to cope needing and absorbing information
and acquiring knowledge; needing an information injection.
“…and the net’s quite a useful thing, and you can talk to people…you can hear
different stories from people so that really helped us.”[Kate, 21 yrs]
“I had a dietician and she gave me a little booklet with lots of leaflets in saying
what I wasn’t allowed…which was quite helpful.” [Donna, 25yrs]
“My mum actually looked on the Internet to find out information about ME and
she wanted to find out if there were any kind of groups for just young people.”
[Miriam, 19yrs]
Position 3 - Information Injection

16. Young person coping. Feeling more informed, having knowledge
and understanding. Feeling in a state of information health.
“I have been reading journals from quite a young age. But I’ve learnt quite a lot
about CF from that.” [Jodie, 21yrs]
“She [the doctor] didn’t acknowledge my knowledge and my experience because I
told her several things that didn’t work for me and she pretty much ignored them.
And just prescribed me something that in the past hadn’t worked for me at all and
actually made my skin worse.” [Katie, 22yrs]
“…but like when I moved to [city] obviously they don’t know me and I think
because the doctors have studied medicine they think they know more than you
know. And I’m not saying I know more than a doctor but I know my body more than
anybody else knows my body.” [Helene, 23yrs]
Position 4 – Information Health

17. Young person coping confidently. Sharing information,
knowledge and experiences; becoming an information donor.
“I started volunteering for AYME [Association of Young People with ME].”
[Miriam, 19yrs]
“I’ve had some interesting chats with medical students because they really want
to learn more about it [ME]”[Rollo, 23yrs]
[Hassan, 18yrs writing a book to encourage others] “I can show the people
more hope, more inspiration, more courage. If you are truly courageous you
can’t just give up your life. I’m going to show this from my book.”
Position 5 – Information Donor

18. Information is empowering increasing confidence , enabling the
young people to re-negotiate their own position and take more
control over their situation.
Information and knowledge can be presented as non-human
actants that change the behaviour of the young people as they
develop informed coping strategies.
Health information is key to change, not the sole remit of the
health care provider, but a wider community responsible with the
young people for gathering information from a wide range of
sources; their social support network being multi-dimensional.
Conclusions from the study (1)

19. Illness changes lives. Often requiring a re-negotiate of social position, so that
they once more fitted in with their social groups. Mostly, the young people
found that friends, family, and other social networks were supportive, and
helped them cope with the changed situation of ill health.
This study has enabled us to understand more clearly the shifting position that
the young person takes in relation to information, knowledge, and their ability
to cope as illustrated on the positional map.
As the young people became more informed about their health conditions,
and gained knowledge and understanding both about their illnesses and their
own bodies and boundaries, then their confidence and capacity to cope with
their conditions increased.
This progression has been identified as the information-coping trajectory.
Conclusions from the study (2)

20. Information literacy needs
Information support needed in relation to stages
of the model
Network of information literacy support spanning
the social worlds supporting the development of
the information needs of the young people as they
progress along the information-coping trajectory
Building on the findings

21. What is health literacy?
‘Health Literacy refers to a set of skills that people need
to function effectively in the health care environment’
(NC Program on Health Literacy, 2013)
‘The degree to which individuals have the capacity to
obtain, process and understand basic health information
and services needed to make appropriate health
decisions’ (US Department of Health and Human
Services, 2010)
Is a key determinant of health (WHO, 2013)
Defining Health Literacy

22. Lack of knowledge and understanding about health
conditions and services
Worse health outcomes
Increased hospitalisations
Greater use of emergency care
Poor medication adherence
Poorer health
Less self-management
Increased cost
NC Program on Health Literacy (2013), World Health Organization (2013)
Poor Health Literacy

23. Improved health literacy:
Builds individual and community resilience
Helps address health inequalities
Improves health and well-being
Promotes empowerment
Promotes participation of people and communities
in their health care
NC Program on Health Literacy (2013), World Health Organization (2013)
Health Literacy

24. WHO (2013) Health literacy crisis, weak health literacy
competencies
(1) Access (2) Understand (3) Appraise (4) Apply -
information relevant to health
Nutbeam (2006) Levels or concepts of health literacy:
(1) Basic/Functional (2) Communicative/Interactive (3)
Critical
Baker (2006) Health literacy: (1) Print literacy (2) Oral
literacy
Examples of Health Literacy Models

25. Parallels between our Information- Coping
Trajectory model and health literacy models

26. Aligns with aspects of Baker’s Conceptual Model of
Health Literacy (2006)
Lack of conceptual knowledge about health and
illness
Information-coping trajectory:
Position 1 - information deficiency
Young person on diagnosis,
coping with the shock of the
new situation experiencing
information deficiency.
“I didn’t really know
much about it [diabetes]
at the time [diagnosis].”
[Andrew, 24yrs]

27. Aligns with Level 1 of Nutbeam’s Health Literacy Model –
‘Interactive Literacy’ and ‘Critical Literacy’ , and Baker’s
Conceptual Model of Health Literacy
Complexity and difficulty of printed and spoken messages
Levels of individual capacity
Basic literacy skills applied in health context
Information-coping trajectory:
Position 2 – ill informed
Young person in early stages of
illness trying to understand
their information needs and
learning to cope often feeling ill
informed.
”Because sometimes doctors use all
the medical terms and terminology
and sometimes even the parents
don’t know what they’re talking
about. So it’s like use words that are
every day.” [James, 21yrs]

28. “Building personal health literacy skills and abilities is a lifelong process. No one
is ever fully health literate. Everyone at some point needs help in understanding
or acting on important health information or navigating a complex system. Even
highly educated individuals may find health systems too complicated to
understand, especially when a health condition makes them more vulnerable”.
”Because sometimes doctors use all the medical terms and terminology and
sometimes even the parents don’t know what they’re talking about.”
[James, 21yrs]
Information-coping trajectory: Positions 2
ill informed & 3 information injection –
WHO (2013)
Young person learning to cope
needing and absorbing
information, acquiring
knowledge; needing an
information injection.
Young person in early stages
of illness trying to understand
their information needs and
learning to cope often feeling
ill informed.

29. Aligns with ‘Health Related Print and Oral Literacy’ aspects of
Baker’s Conceptual Model of Health Literacy (2006)
Asking for information / expressing the information need
New knowledge
Being able to understand oral or written health information
Overcoming barriers to change
Information-coping trajectory:
Position 3 – information injection
Young person learning to cope
needing and absorbing
information, acquiring
knowledge; needing an
information injection.
“…and the net’s quite a useful
thing, and you can talk to
people…you can hear different
stories from people so that
really helped us.”[Kate, 21 yrs]

30. Aligns with Level 2 of Nutbeam’s Health Literacy Model –
‘Interactive Literacy’
Evaluating a health message and interacting appropriately with the
environment
Improved motivation and self confidence e.g. The patient negotiating
treatment with the doctor based on an understanding of their condition
gained from finding the information for themselves
Information-coping trajectory:
Position 4 –information health
Young person coping. Feeling more
informed, having knowledge and
understanding. Feeling in a state of
information health.
information health
“…but like when I moved to [city] obviously
they don’t know me and I think because the
doctors have studied medicine they think they
know more than you know. And I’m not saying I
know more than a doctor but I know my body
more than anybody else knows my body.”
[Helene, 23yrs]

31. Aligns with Levels 2 and 3 of Nutbeam’s Health Literacy Model – ‘Interactive
Literacy’ and ‘Critical Literacy’; Baker’s Conceptual Model of Health Literacy;
WHO Health Literacy report (2013)
Relies on a solid foundation of functional health literacy
Behaviour change
Extracting and applying information
Ability to evaluate health issues
Critical thinking (Dina & Borzekowski, 2009)
Ability to navigate the healthcare system effectively
Information-coping trajectory: -
Position 5 – information donor
Young person coping confidently.
Sharing information, knowledge and
experiences; becoming an information
donor.
“I started volunteering for AYME
[Association of Young People with
ME].” [Miriam, 19yrs]

32. Judge relevance and quality of health information
Analysis skills that allow individual and group empowerment
Engaging with peers and communities via networks and social media to
both gain information and support others
Social action and participation in health-related issues
Facilitation of community development – offering advice
New knowledge, positive attitudes, greater self-efficacy, behaviour change
(Baker, 2006)
Improved health outcomes (Baker, 2006)
Information-coping trajectory: Position 5
(cont’d) - information donor
Young person coping confidently.
Sharing information, knowledge and
experiences; becoming an information
donor.
[Hassan, 18yrs “I can show the people
more hope, more inspiration, more
courage. ..you can’t just give up your life.
I’m going to show this from my book.”

33. Information-coping trajectory: Position 5
(cont’d) – information health
WHO (2013) “Patients and
members of the general public
supporting each other can
contribute to reducing the
burden on conventional health
care systems . PatientsLikeMe, a
social networking site for
patients with various medical
conditions, is now a classic
example of online patient-to-
patient support, and those using
it often report several perceived
benefits and improved disease
self-management and
outcomes”.
A solution requiring a blend
of support networks
combining personal worlds
and institutional worlds

34. Develop the existing networks of
information literacy support spanning
the social worlds supporting the
development of the information needs
of the young people as they progress
along the information-coping
trajectory
Call to action

35. Consumer Health Literacy initiatives
Zionts et al (2010) – Pittsburgh Public Library
Malachowski (2011) – Patient activation
Strong et al (2011) – Model for health literacy instruction
Public libraries initiatives in the UK
Bibliotherapy - Books on Prescription/Reading Well – Reading Agency
Reading groups Hicks,D. (2006)
Collaborations between the health and public sectors to
enhance health literacies are needed
Enhance existing relationships with health professionals, allied
health professionals and patient information liaison staff
Roles and recommendations for
Health Librarians

36. Further development and testing of the information-
coping trajectory in different situations
Further systematic mapping and modelling of the
relationship between the information –coping trajectory
onto health literacy models and testing of those concepts
Interesting discussions with other health information
professionals and researchers regarding the role of health
information in the strengthening of the network of
information support for young people with health issues
Future work

37. Presented the information coping trajectory
not a purely conceptual model, but an
evidence based model grounded in the data
Presented the idea of mapping the model
onto existing health literacy models
Presented ideas for future work, and further
development of the research, conceptual
development, and models
THANK YOU!
Summary

38. Baker, D. (2006) The meaning and the measure of health literacy.
Journal of General Internal Medicine. 21 (8), 878-833
Clarke, A. (2003) Situational Analysis: Grounded theory after the
Postmodern turn. Symbolic Interaction. 26 (4) 553-576.
Hicks, D. An audit of bibliotherapy/Books on Prescription activity in
England [online]. 2006. Accessible at:
http://research.mla.gov.uk/evidence/documents/bibliotherapy_1277
9.pdf
Institute of Medicine. (2004) Health Literacy: A Prescription to End
Confusion. Washington, DC: National Academies Press
Kickbusch, I, Pelikan, J.M., Apfel, F., Tsouros, A.D. (2013) Health
literacy: The solid facts. Copenhagen: WHO, Regional
Office, Europe.
References

39. Malachowski, M. (2011) Patient activation: public libraries and health
literacy. Computers in Libraries
Mitchell. B. (2010) Nutbeam’s Health Literacy Model. Online Journal of
Issues in Nursing. 15 (3). Available from:
http://www.medscape.com/viewarticle/729396_6 (Accessed 1st April
2014)
NC Program on Health Literacy (2013) What is health literacy? NC
Program on Health Literacy [Internet] Available from:
http://nchealthliteracy.org/about.html (Accessed 31 March 2014)
Nutbeam, D. (2006). Health literacy as a public health goal: a challenge
for contemporary health education and communication strategies into
the 21st century. Health Promotion International, 15 (3), 259-267
Sen, B. & Spring, H. (2013) The information, knowledge and
communication strategies of young people with long term illness.
Journal of Documentation. 69 (5) 638-666.
References

40. Strong, M., Guillot, L., Badeau, J. (2012) Senior CHAT: a model for
health literacy instruction. New Library World, 113 (5/6), 245-261
U.S. Department of Health and Human Services. Healthy People
2010: Understanding and Improving Health. 2. Washington, DC:
U.S. Government Printing Office; 2000. Chapter 11.
World Health Organization (2013) Health literacy: the solid facts.
World Health Organization Europe. Available from:
http://www.euro.who.int/__data/assets/pdf_file/0008/190655/e9
6854.pdf
References