Supporting young people's health information needs.

Dr Barbara Sen, University of Sheffield

Dr Hannah Spring, York St John University

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

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

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)

Open data available on the Youthealthtalkwebsite 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

Mapping techniques1. 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

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

Messy Situational and Relational Maps

Young people coping with long term health

condition

Relationships

Political/Economic ElementsNot enough peopleFunding issuesNeed for research

Discursive Constructions of Non-Human ActantsInformation as a form of social supportCommunication channels as enablers for accessing supportConstructions of the health condition

Temporal ElementsTime needed to talkToo much time taken to be given informationWasted time – through lost resultsMaturing of the young person

Socio-cultural /Symbolic ElementsYoung person needing to fit in – social acceptanceYoung people in societyIllness

Major Issues/Debates (Usually Contested)Importance of communication Importance of being informed Importance of relationships and needing supportImportance of healthy lifestyle

Related Discourses (Historical Narrative, and/or Visual)Discourses on individualismDiscourses on health and illnessDiscourses on information, knowledge and communicationDiscourses on lifestyleDiscourses about relationships and support

Other Kinds of ElementsPersonal attitudes and emotionsConflict

Spatial ElementsPersonal spaceSocial spaces

Situational ordered maps – example elements from the ordered map

Social Worlds Arenas Map

Positional Map

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

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

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

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

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

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

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)

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)

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

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

Lack of knowledge and understanding about health conditions and servicesWorse health outcomesIncreased hospitalisationsGreater use of emergency carePoor medication adherencePoorer healthLess self-managementIncreased cost

NC Program on Health Literacy (2013), World Health Organization (2013)

Poor Health Literacy

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

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

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

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]

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]

“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.

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]

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]

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]

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.”

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

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

Consumer Health Literacy initiativesZionts et al (2010) – Pittsburgh Public Library

Malachowski (2011) – Patient activation

Strong et al (2011) – Model for health literacy instruction

Public libraries initiatives in the UKBibliotherapy - 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

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

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

Baker, D. (2006) The meaning and the measure of health literacy. Journal of General Internal Medicine. 21 (8), 878-833Clarke, 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_12779.pdfInstitute of Medicine. (2004) Health Literacy: A Prescription to End Confusion. Washington, DC: National Academies PressKickbusch, I, Pelikan, J.M., Apfel, F., Tsouros, A.D. (2013) Health literacy: The solid facts. Copenhagen: WHO, Regional Office, Europe.

References

Malachowski, M. (2011) Patient activation: public libraries and health literacy. Computers in LibrariesMitchell. 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), 259-267Sen, 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

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/e96854.pdf

References