Supporting young people’s heath information needs - Barbara Sen & Hannah Spring
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  • The young people coping with long term health conditions are at the centre of this situation. They are part of social worlds that come together with other individuals and social groups to engage in health discourse within a range of personal and institutional arenas where they obtain social support including information. The approach in this study has identified those social worlds and established categories of both personal, and institutional social worlds/arenas for health discourse. The Information and communication experiences have been explored through the narratives of the young people. The young people share a common experience of “coping with illness”, yet there are different and sometimes conflicting experiences and discourses. Areas of conflict have emerged with power struggles being played out within the institutional healthcare arena where negotiations often took place regarding health care decisions,
  • Young people particularly on diagnosis are coping with the shock of the new situation and experiencing a lack of information or ‘information deficiency’.2.      In the early stages of illness the young people are trying to understand their information needs and learning to cope, many of them feeling ‘ill informed’.3.      The young people are learning to cope, absorbing information, building their knowledge, finding they need an ‘information injection’.4.      The young people have information, and knowledge about their illness and their ability to cope and now have ‘information health’.5.      Becoming an ‘information donor’ – the young people grow in confidence and share the information and the knowledge with other young people in similar situations.
  • 11 comments reflected this position. A person who does not have enough information to understand the situation. A young person at pre-diagnosis or at diagnosis, may be lacking information, and could be described as information deficient. Little or no information or understanding, combined with a possible lack of maturity leaves the young person unable to cope and experiencing shock.
  • Comments from 22 individuals reflected this position. Feeling ill-informed. A person who has basic information but may not be able to use that information effectively, may not have the right information to help their needs, thereby not achieving full information health. A Young person in the early stages of illness being given basic information, but often lacking sufficient information and may feel ill-informed. This leaves the young person in a state of confusion, they may experience fear, misunderstanding, and react with anger, denial or rebellion. This state may be caused by a number of factors including mis-information, information disconnects in the communication process, information illiteracy.
  • Comments from 25 individuals reflected this position. When a person realizes they have an information need, or someone else sees that the person has an information need, an injection of information might fulfill that need. A Young person learning to cope with illness, has an information need, they seek, filter and synthesise information to boost their information to the right levels, addressing the information deficiency, and attaining information health. If they can’t do the injection themselves, they may need help from others. With this information, they develop understanding. They start to use this information, combined with experience to find ways of coping and adjusting to their health situation.
  • Comments from 16 individuals reflected this position. Having information health. When a person has the information they need. A young person who feels informed, has gained knowledge and understanding, and feels confident in using that information to make decisions may be described as having information health. They start to negotiate their health care as they build on their resources, combining the information with their experience, and becoming more knowledgeable about their illness and their ability to cope.
  • Comments from 10 individuals reflected this position. Being an Information donor. When a person has information that they can share to bring others to information health. The person has an altruistic view, and feels confident that they can help others to information health by sharing information, knowledge and their experience, becoming information providers/donors.
  • The young people coping with long term health conditions are at the centre of this situation. They are part of social worlds that come together with other individuals and social groups to engage in health discourse within a range of personal and institutional arenas where they obtain social support including information. The approach in this study has identified those social worlds and established categories of both personal, and institutional social worlds/arenas for health discourse. The Information and communication experiences have been explored through the narratives of the young people. The young people share a common experience of “coping with illness”, yet there are different and sometimes conflicting experiences and discourses. Areas of conflict have emerged with power struggles being played out within the institutional healthcare arena where negotiations often took place regarding health care decisions,
  • How do we build on the findings of the original study by taking the model and considering the information literacy needs and information support in relation to the stages of the model, and different stakeholders that the young people interact with in different social worlds identified in the situational analysis. ‘Social worlds’ exist where groups of people have shared commitments to activities.  The young people occupy a ‘social world’; health professionals occupy another social world.  These worlds overlap when people interact and it is at that stage that information is communicated and differences between the social worlds can become apparent. The recommendation is for a network of information literacy support spanning the social worlds supporting the development of theinformation needs of the young people as they progress along the information-coping trajectory.
  • Basic/functional – basic reading and writing skills to enable function effective in everyday situations, broadly compatiable with the definition of health literacyCommunicative/interactive literacy – more advanced cognitive and literacy skills which togethr with social skills can be used to actively partcipate in everydau activities to extract information and derive meeaning from different forms of communiction and apply new information to changing circumstances.Critical literacy – more advanced congitive skills which together with social skills, can be applied to critically analyse information and use this information to exert greater control over life events and situations. But might be more work to include it.I also like - Institute of Medicine (2010) Health literacy(1) cultural and conceptual knowledge(2) oral literacy, including speaking and listening skills(3) print literacy, including writing and reading skills(4) numeracy.
  • Not having a clear understanding of the health condition or the skills to be able to seek relevant information
  • Knowing there is an information need, but requiring the right skills to deal with it.
  • “…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]
  • Interactivity and criticality are key at this level according to the health literacy models.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.”
  • ‘Patient activation’ – the public librarians role in public health promotion

Supporting young people’s heath information needs - Barbara Sen & Hannah Spring Presentation Transcript

  • 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