Co-constructing Meaning and Negotiating Participation: Ethical Tensions when ‘Giving Voice’ through Digital Storytelling

Waycott, Jenny; Davis, Hilary; Warr, Deborah; Edmonds, Fran; Taylor, Gretel

doi:10.1093/iwc/iww025

Cited by 9 publications

(11 citation statements)

References 27 publications

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“…Co-creation is a "sophisticated, valuebased, context-driven, collaborative effort to develop new paradigms, products, and services to satisfy human wants" (Akhilesh, 2017, p. 2). Co-creation was observed in several ways: (a) support given by facilitators to the older adults to create the digital story (Crete-Nishihata et al, 2012;Hamilton & Atkinson, 2009;Stenhouse et al, 2013); (b) participatory design (Damianakis et al, 2010;Njeru et al, 2015;Smith et al, 2009;Subramaniam & Woods, 2016); and (c) active engagement of older adults during the digital storytelling process (Briant et al, 2016;Waycott et al, 2017). Stenhouse et al (2013) proposed that digital storytelling is an arts-based method of representing experience of a person living with dementia.…”

Section: Processes and Methods Utilized To Develop The Storiesmentioning

confidence: 99%

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Digital Storytelling in Older Adults With Typical Aging, and With Mild Cognitive Impairment or Dementia: A Systematic Literature Review

et al. 2021

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The rates of dementia are on the rise as populations age. Storytelling is commonly used in therapies for persons living with dementia and can be in the form of life review, and reminiscence therapy. A systematic literature review was conducted to examine the range and extent of the use of digital technologies for facilitating storytelling in older adults and their care partners, and to identify the processes and methods, the technologies used and their readiness levels, the evidence, and the associated outcomes. Eight electronic databases were searched: Medline, EMBASE, PsycINFO, CINAHL, Abstracts in Social Gerontology, ERIC, Web of Science, and Scopus. We included 34 studies. Mild cognitive impairment or dementia represented over half of medical conditions reported in the studies. Overall, our findings indicate that the most common use of digital storytelling was to support older adults’ memory, reminiscence, identity, and self-confidence; however, the level of evidence of its effectiveness was low.

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Section: Processes and Methods Utilized To Develop The Storiesmentioning

confidence: 99%

“…Public viewing (n = 2) Hausknecht et al (2016Hausknecht et al ( , 2017 Communication and social connection (with broader community) 2 (5.9) Waycott et al (2017), Williams et al (2017) Communication to inform care provision from service providers 2 (5.9)…”

Section: Outcomes Of Digital Storytelling and Level Of Evidencementioning

confidence: 99%

Digital Storytelling in Older Adults With Typical Aging, and With Mild Cognitive Impairment or Dementia: A Systematic Literature Review

et al. 2021

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“…This section focuses on our takeaways related to the third research question regarding our collaboration with human rights organizations (RQ3). As previous research has stated, "giving voice" through technology is not a straightforward task considering the relations established between the HCI researchers, stakeholders, and participants [131]. Furthermore, we (the research team) recognize a limitation in our reliance on the MNM in our work.…”

Section: Reflections On Interdisciplinary Work For Sensitive Narrativesmentioning

confidence: 90%

“…Additionally, to further the discussion in HCI about learning and collaborating with professionals in the domain of human rights and victimization stories, we refect on the roles of our collaboration and the implications of working with the museum staf as "value advocates" instead of working directly with the victims whose stories the MNM collects. In this way, we contribute to HCI discussion around co-creation and "giving voice" [131] to others through research.…”

Section: Discussionmentioning

confidence: 99%

AR Exhibitions for Sensitive Narratives: Designing an Immersive Exhibition for the Museum of Memory in Colombia

Gasca

Jacobs

Monroy-Hernández

et al. 2022

Designing Interactive Systems Conference

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Augmented Reality (AR) in human rights museums and memorialization eforts can empower these initiatives to create stronger connections between audiences and victims; however, there is little research on the risks of depicting sensitive narratives through immersive technologies. We examined the opportunities and challenges of applying AR to memorialization by designing and deploying an AR application with a human rights museum in Colombia. We report lessons from our collaboration about navigating the risk of re-victimizing testimonial authors while creating engaging AR interactions. Furthermore, we report on a user study where participants interacted with our museum exhibition. Based on observations of our co-design process and the user study results, we discuss implications for immersive application design with strategies for selecting immersive content, balancing audience engagement, and identifying technology gaps. Finally, we refect on the implications for collaborations between HCI researchers, human rights professionals, and organizations to inform designs involving sensitive narratives. CCS CONCEPTS• Human-centered computing → Human computer interaction (HCI); Empirical studies in HCI .

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“…Setting or blurring boundaries A common and related challenge when working closely with vulnerable or marginalized participants is maintaining boundaries around the researcher's role and the setting of the research [23]. Much of the research that has been discussed at our workshops to date involved extended periods of time working with participants in field studies.…”

Section: Workhopmentioning

confidence: 99%

Ethical Encounters in HCI

Waycott

Munteanu

Davis

et al. 2017

Proceedings of the 2017 CHI Conference Extended Abstracts on Human Factors in Computing Systems

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This workshop builds on the success of prior workshops that brought together HCI researchers to share stories about ethical challenges faced when conducting research in sensitive settings. There is growing recognition that reflective and empathetic approaches are needed to conduct ethical research in settings involving people who might be considered vulnerable or marginalized. At our previous workshops, researchers discussed personal experiences and described the complex challenges they have faced in research as diverse as designing information systems for families of children in palliative care [6] to analyzing social media posts about mental health [1]. In this follow-up workshop we aim to extend opportunities for knowledge-sharing, build on the lessons learned, and generate a range of resources to help HCI researchers manage complex ethical issues when working in sensitive settings.

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Co-constructing Meaning and Negotiating Participation: Ethical Tensions when ‘Giving Voice’ through Digital Storytelling

Cited by 9 publications

References 27 publications

Digital Storytelling in Older Adults With Typical Aging, and With Mild Cognitive Impairment or Dementia: A Systematic Literature Review

Digital Storytelling in Older Adults With Typical Aging, and With Mild Cognitive Impairment or Dementia: A Systematic Literature Review

AR Exhibitions for Sensitive Narratives: Designing an Immersive Exhibition for the Museum of Memory in Colombia

Ethical Encounters in HCI

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