Mapping the information-coping trajectory of young people with long term illness. An evidence based approach
| Published date | 02 September 2013 |
| Pages | 638-666 |
| DOI | https://doi.org/10.1108/JD-10-2012-0133 |
| Date | 02 September 2013 |
| Author | Barbara Anne Sen,Hannah Spring |
| Subject Matter | Library & information science,Records management & preservation,Document management |
Mapping the information-coping
trajectory of young people with
long term illness
An evidence based approach
Barbara Anne Sen
The Information School, The University of Sheffield, Sheffield, UK, and
Hannah Spring
Faculty of Health and Life Sciences, York St John University, York, UK
Abstract
Purpose – The purpose of this paper is to explore the relationship between information and coping
from the experiences of young people coping with long term illness.
Design/methodology/approach – Situational analysis was used as a methodological approach. It
has roots in the Chicago Symbolic Interactionism School. Cartographic approaches enabled the
analysis, mapping the complexities emerging from the data.
Findings – As the young people became more informed about their health conditions, and gained
knowledge and understanding both about their illnesses, their own bodies and boundaries, their
confidence and capacity to cope increased. Gaining confidence, the young people often wanted to share
their knowledge – becoming information providers themselves. From the data, five positions on an
information-coping trajectory were identified: information deficiency; feeling ill-informed; needing an
injection of information; having information health; and becoming an information donor.
Research limitations/implications – The research was limited to an analysis of 30 narratives.
The paper contributes to information theory by mapping clearly the relationship between information
and coping.
Practical and social implications – The study establishes a relationship between levels of
information and knowledge and the ability to cope with illness.
Originality/value – The information theories in this study have originality and multi-disciplinary
value in the management of health and illness, and information studies.
Keywords Information,Coping, Trajectory, Situational analysis,Young people, Health information,
Information behaviour, Youth
Paper type Research paper
Introduction
This paper presents the findings of a study that re-uses (with permission) 30 interviews
gathered by the charity DIPEx (Youthhealthtalk) to explore the relationship between
information and coping where young people are coping with long-term illnesses. The
study uses the analytical approach Situational Analysis, an elaboration of Grounded
Theory developed by Clarke (2005). As the approach is not widely used in Library and
The current issue and full text archive of this journal is available at
www.emeraldinsight.com/0022-0418.htm
Thanks to the charity DIPEx for their permission to use the data on the Youth Health Talk
website available at: www.youthhealthtalk.org Thanks also to the young people who contributed
their stories to that website.
JDOC
69,5
638
Received 8 October 2012
Accepted 11 October 2012
Journal of Documentation
Vol. 69 No. 5, 2013
pp. 638-666
qEmerald Group Publishing Limited
0022-0418
DOI 10.1108/JD-10-2012-0133
Information Science research and will therefore be explained, before illustrating its
application in this research context. The findings allow for the relationship between
information and coping to be mapped presenting a model of the information-coping
trajectory grounded in evidence, and drawing on previous studies.
The originality of this paper is that it uses the mapping techniques within
situational analysis which have not been used previously in this context to map the
relationship between information-coping based on evidence supplied by young people
from their own experiences. Trajectory has been used in relation to illness; trajectory
has been used in coping, but the information-coping trajectory has not bee n mapped
explicitly and clearly in previous studies.
Background literature
Problems have been identified in supporting young people with information in
healthcare contexts, with claims that health professionals have a “routine” approach to
information support not necessarily meeting the needs of teenagers and young adults
(Lewis et al., 2010). The period of transition from teenage years to adulthood is “known
to be a particularly challenging time for young people generally” (DoH, 2006). Support
and understanding is needed in helping the young person develop confidence in
managing health conditions. Information is one form of social support that can help
young people at this time of need. Decker et al. (2004) identify the need to assess
adolescents’ information needs throughout the course of their treatment in order that
healthcare professionals can develop meaningful interventions and help the young
people cope. Thorne et al. (2004) identify the criticality of communicating information
effectively and appropriately to help people cope with illness, with sensitivity needed
in health communications (Buckloh et al., 2008).
There are a number of models, theories and discussions of communication on the
complexity of information communication as a form of social support (Brashers et al.,
2004; Folkman and Lazarus, 1988). Goldsmith and Fitch (1997, p. 454) present a
situational study of communicating social support identifying complexity through
potential contradictions or “dilemmas” where for example advice and support may be
viewed by the receiver as either “helpful”, a positive experience, or “butting in”, a
negative one. Lewis et al. (2010) present a theoretical framework to explain informati on
exchange in the healthcare context specifically with young people. The model identifies
both positive and negative influences of information and knowledge exchange in
clinical contexts during the transition years, aged 13-19. Recommendations are made to
better support young people with their information needs such as building rapport in
the clinical encounter, providing opportunities to talk without parents present, and
giving more practical information.
Young et al. (2003) show that young people’s maturity, and their preferences for
communication are not straightforward again showing contradictions, tensions, and in
some cases binary oppositions e.g. doctor as hero/doctor as villain ( Jakobson, 1971;
Le
`vi-Strauss, 1994; Saussure, 1983). These contradictions illustrate human
individuality “everybody’s different” and yet similarities, “everybody’s the same”
(Verma, 1989) illustrating communication complexity, and requiring skillful handling,
and understanding of the context. Contradictions also occur when individuals have
different constructions of the situation or phenomenon i.e. having different
understandings or perceptions (Strauss et al., 1981). These contradictions are noted
Information-
coping trajectory
639
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