Preliminary Conference Agenda

About 19.3 million people are newly diagnosed with cancer each year, but only a small percentage of all diagnoses refer 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.

This paper reports early results from an ongoing study exploring the personal information management of nonbinary people in Ireland. Cushing [1, 2] and other PIM scholars have found that personal information is maintained because it represents an individual’s identity to them-selves and others. In the context of inequality, Cushing and Kerrigan [3] found that PIM can be perceived as a burden. This study furthers our PIM-B work through exploring the lived experiences of nonbinary individuals that have to maintain personal information that does not represent their identity in order to engage in society. Nonbinary people often find themselves in the position of maintaining personal information that does not represent their gender identity as a result of the traditional binarised structure of society more broadly. How does the requirement to maintain this information that is not representative of gender diversity mediate PIM? Using reflexive thematic analysis, our early analysis of 3 interviews suggests that nonbinary people in Ireland perceive both the information use and the exertion of control over distribution of personal information as a burden. This finding can be used to refine the concept of a PIM-B, while also using PIM-B as an indicator of the inequalities gender minorities face.

Research shows that music helps people regulate and process emotions to positively impact their mental health, but there is limited research on how to build music systems or services to support this. We investigated how engagement with music can help the listener support their mental health through a case study of the BTS ARMY fandom. We conducted a survey with 1,190 BTS fans asking about the impact BTS’ music has on their mental health and wellbeing. Participants reported that certain songs are appropriate for specific types of mood regulations, attributed largely to lyrics. Reflection, connection, and comfort were the top three experiences listeners shared during and after listening to BTS’ music. External factors like knowledge about the context of a song’s creation or other fans’ reactions to a song also influenced people’s feelings toward the music. Our research suggests an expanded view of music’s impact on mental health beyond a single-modal experience to a dynamic, multi-factored experience that evolves over time within the interconnected ecosystem of the fandom. We present the Dynamic Music Engagement Model which represents the complex, multifaceted, context-dependent nature of how music influences people’s mental health, followed by design suggestions for music information systems and services.