Multi-user Narrative Sharing System for Children with Chronic Illness

Chin, Jui‐Chih; Tsuei, Mengping

doi:10.1109/icalt.2009.154

Cited by 6 publications

(4 citation statements)

References 3 publications

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“…They found that others appreciating and recognizing the patient's creations made them feel empowered [3]. Building on that work, Chin and Tsuei created a narrative sharing system for peer patients that allowed patients to "express their idealized self" through selecting a user name and avatar [6]. Another system, "Coping Cart", allows patients to watch videos of other patients in similar situations, draw or write stories about their experiences, and play with toy stethoscopes and surgical tools.…”

Section: Pediatric Patients and Technologymentioning

confidence: 99%

"I'm Not Like My Friends"

Liu

Inkpen

Pratt

2015

Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work &Amp; Social Computing

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Children diagnosed with a chronic illness, such as cancer, experience a vastly different childhood than their healthy counterparts. They may struggle with accepting that they are no longer seen as "normal". We surveyed 10 children who have a chronic illness and interviewed 15 healthcare professionals and 7 parents of chronically ill children to understand their communication practices and challenges of how these patients stay connected with their peers. We found that due to the nature of their illness and constant hospitalization, pediatric patients often use various communication technologies to stay in touch with friends and try to maintain normalcy in their lives. Some patients also had to create a "new normal" that balanced life before and after being diagnosed. Based on these results, we suggest opportunities for technology to help patients connect to others and retain a sense of normalcy or to encourage them to embrace their "new normal".

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Section: Pediatric Patients and Technologymentioning

confidence: 99%

"I'm Not Like My Friends"

Liu

Inkpen

Pratt

2015

Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work &Amp; Social Computing

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“…The same research group had previous experience in hospital settings through the use of text-based storytelling technologies with children in a hospital's cardiology unit [8]. More recently, Chin and Tsuei [12] also developed a storytelling system for hospitalized children with chronic illness to share and co-narrate stories. None of these efforts were meant to facilitate communication between patients and health professionals.…”

Section: Computing Technologies For Children In Medical Settingsmentioning

confidence: 97%

Supporting face-to-face communication between clinicians and children with chronic headaches through a zoomable multi-touch app

Hourcade

Driessnack

Huebner

2012

Proceedings of the SIGCHI Conference on Human Factors in Computing Systems

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Chronic headaches are one of the top five health problems for young children in the United States, negatively affecting their quality of life and learning opportunities. A clear understanding of children's headache characteristics is crucial for delivering appropriate treatment. However, current data collection methods were designed for adults often resulting in insufficient information. In this paper we present a novel method to help children communicate with health care providers and researchers about their headaches. It augments an existing child-centric method called Draw-and-Tell Conversation, which has already been shown to provide more actionable information from children than standard data collection methods. It does so by enabling children to draw their symptoms on a zoomable drawing application, giving them the ability to provide more details and context than on paper. We present a study conducted with nineteen children aged 7 to 12 suggesting that children provided more information about their headaches when using the zoomable drawing application than when drawing on paper. This study provides a rare example of a mobile device used to enhance face-to-face interactions and contributes evidence of a specific benefit of zoomable user interfaces.

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“…Despite the prevalence of these mental health symptoms and worse health-related quality of life among patients with chronic rheumatologic illnesses, access and delivery of mental health treatment to this population is still lacking [ 15 , 16 ]. Non-medical programs that build emotional resilience may play an important role in providing support that is easily accessed and implemented.…”

Section: Introductionmentioning

confidence: 99%

Storytelling of Young Adults with Chronic Rheumatologic Illnesses: A Pilot Study

Lanis

Peskin

et al. 2022

Healthcare

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Background: Narrative medicine allows patients to reconstruct medical experiences through written portrayals of perspectives, building a mutual depiction of illness while creating a sense of belonging. This modality has not been previously studied in youth with rheumatologic illnesses, a population with high mental health burden and worse health-related quality of life. We aimed to assess the feasibility of a storytelling intervention in this patient population. Methods: This is a mixed-methods study of 14–21-year-olds with rheumatologic diseases followed in the Bronx, NY. Participants completed an hour-long creative writing session focused on patient experience with chronic disease. Pre- and post-questionnaires assessed patient-reported outcomes, and post-participation video interviews assessed personal experiences through the storytelling session. Results: Thirteen female patients were divided amongst four creative writing sessions. Twelve patients completed pre-study questionnaires and 10 completed post-study questionnaires, with 100% completion of the post-participation interviews. PedsQL surveys showed statistically significant improvement in physical health (p < 0.02), and there was no significant difference between pre- and post-scores for any other questionnaires. Interview thematic domains included writing motivation, prior writing experience, illness experience, relating to others, relationship with providers, and support. Conclusion: Creative writing is a feasible and acceptable intervention for youth with rheumatologic illnesses.

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Multi-user Narrative Sharing System for Children with Chronic Illness

Cited by 6 publications

References 3 publications

"I'm Not Like My Friends"

"I'm Not Like My Friends"

Supporting face-to-face communication between clinicians and children with chronic headaches through a zoomable multi-touch app

Storytelling of Young Adults with Chronic Rheumatologic Illnesses: A Pilot Study

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