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“I Always Asked a Lot of Questions“– The Information Journey of Young Adults with Cancer in Germany

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Information for a Better World: Normality, Virtuality, Physicality, Inclusivity (iConference 2023)

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Abstract

About 19.3 million people are newly diagnosed with cancer each year, but only a small percentage of all diagnoses refers to young adults (18 - 39 years). Therefore, they are often not focused on within the healthcare infrastructure, although they have age-specific information, care and service needs. This results in difficulties that will be examined in this article concerning the information journey of the target group. Based on fourteen semi-structured qualitative interviews, this article describes the use of information sources during the cancer patient journeys of young adults. Furthermore, it describes problems the target group experiences. The data indicate that young adults, regardless of whether they actively seek information or rarely seek information at all, often have to rely on serendipity to obtain helpful information. Furthermore, problems regarding the reliability of information sources have been identified and information relating to non-medical needs must be sought autonomously, which results in overload and uncertainty. For the circumvention of these difficulties, improvements are needed in the provision of information for young adults. The knowledge about validated information sources would support the information journeys during their cancer patient journeys.

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Author information

Authors and Affiliations

  1. Berlin School of Library and Information Science, Humboldt-Universität zu Berlin, Berlin, Germany

    Paulina Bressel

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  1. Paulina Bressel
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Correspondence to Paulina Bressel .

Editor information

Editors and Affiliations

  1. iSchool Organization, Berlin, Germany

    Isaac Sserwanga

  2. Victoria University of Wellington, Wellington, New Zealand

    Anne Goulding

  3. University of Missouri, Chicago, IL, USA

    Heather Moulaison-Sandy

  4. University of South Australia, Adelaide, SA, Australia

    Jia Tina Du

  5. University of Porto, Porto, Portugal

    António Lucas Soares

  6. Monash University, Clayton, VIC, Australia

    Viviane Hessami

  7. University of Tennessee at Knoxville, Knoxville, TN, USA

    Rebecca D. Frank

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Bressel, P. (2023). “I Always Asked a Lot of Questions“– The Information Journey of Young Adults with Cancer in Germany. In: Sserwanga, I., et al. Information for a Better World: Normality, Virtuality, Physicality, Inclusivity. iConference 2023. Lecture Notes in Computer Science, vol 13971. Springer, Cham. https://doi.org/10.1007/978-3-031-28035-1_11

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  • DOI: https://doi.org/10.1007/978-3-031-28035-1_11

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  • Online ISBN: 978-3-031-28035-1

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