Mapping the information-coping trajectory of young people with long term illness

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.

Living with a rare disorder: a systematic review of the qualitative literature

“…). Patients who are experts on their own diagnosis have been shown to cope better (Anne Sen and Spring ), have better self‐rated health status, and be less dependent on hospital care (Lorig et al. ).…”

Human information behavior during the Covid-19 health crisis. A literature review

“…If certain information practices may produce negative emotions and result in inconsistent behaviors, other practices such as sharing information with other people appear to regulate the emotional response to information about the crisis (Chivers et al, 2020;Tandoc & Lee, 2020). Second, aligning with studies on HIB in the context of illness, the corpus of works analyzed here make emotions dependent on, and produced by, the situation in all its dimensions more than the search process itself, and many authors stress the entangled nature of emotions during information practices (Chivers et al, 2020;Eriksson-Backa, 2020;Ke et al, 2021;Rak, 2020;Sen & Spring, 2013;Song et al, 2021;Wong et al, 2021). The fact that, in real situations, emotions coexist and combine makes it a bit more difficult to understand them in connection to HIB, which leads to a third important implication.…”

“…According to McKenzie and Willson (2019), social interaction and information exchanges help to redefine oneself and a personal situation during "transitions", including situations of substantial change in a person's life, such as development of disease. In the context of illness, diversified information sources, experiences, and communication channels enable individuals to build the capacity to cope, while individual coping strategies allow individuals to deal with health situations through different information practices (Sen & Spring, 2013;Theis et al, 2021). The search for normality after a traumatic event, such as the diagnosis of a chronic disease, appears to be an information-based process in several studies (Genuis & Bronstein, 2017;Patel, Blandford, Stephenson et al Steinerová, 2019).…”

Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany

“…Other studies have also shown that access via the internet has become increasingly important in recent years [ 30 ]. Through online communities, individuals experienced in dealing with their rare disease can eventually contribute to sharing information and even advise other families and health professionals [ 31 ]. Experts in this study emphasized that highly motivated families seek psychosocial support through this route, as it requires a high level of engagement.…”