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Using Diaries to Probe the Illness Experiences of Adolescent Patients and Parental Caregivers

Published: 23 April 2020 Publication History

Abstract

Adolescents with chronic conditions must work with family caregivers to manage their illness experiences. To explore how technology can support collaborative documentation of these experiences, we designed and distributed a paper diary probe kit in a two-week field deployment with 12 adolescent-parent dyads (24 participants). Three insights emerged from the study that highlight how technology can support shared illness management: 1) provide scaffolds to recognize physical and emotional experiences in the context of daily activities; 2) help families reconstruct patient experiences; and 3) adapt to individual preferences for capturing, representing and sharing experiences. We discuss opportunities for HCI research that follow from these findings and conclude by reflecting on the benefits and limitations of using diary probes with adolescent patients and their parental caregivers.

Supplemental Material

ZIP File
Attached here is a zip file containing auxiliary materials, including sample pages of the diary booklet used in the study (.png), print-ready (.pdf) versions of the diary booklet and sticker sheets, text messaging protocol (.pdf), descriptive statistical analysis of diary entries (.pdf), and a qualitative analysis code book (.pdf).

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  1. Using Diaries to Probe the Illness Experiences of Adolescent Patients and Parental Caregivers

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    CHI '20: Proceedings of the 2020 CHI Conference on Human Factors in Computing Systems
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    DOI:10.1145/3313831
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    Author Tags

    1. adolescents
    2. chronic illness
    3. co-design
    4. diary studies
    5. family informatics
    6. family-centered design
    7. health
    8. probes

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