Participatory Design to Address Stigma with Adolescents with Type 1 Diabetes

The role of product development in the battle against product-related stigma – a literature review

“…Furthermore, in many of the presented solutions, the product developer interacts with real users (e.g. Gherardini et al 2020;McCarthy, Ramírez, and Robinson 2017;Bright and Coventry 2013). On the one hand, this may sensitise the developers to better understand the problems of those being actually stigmatised.…”

“…• Use camouflage or disguise (Bispo and Branco 2009;Green 2009;Jacobson 2014;McCarthy, Ramírez, and Robinson 2017;Vaes 2019;; de Barros, Duarte, and Cruz 2011; Partheniadis and Stavrakis 2019) • Create a diversion of attention (Jacobson 2014;Vaes 2019; • Strengthen the product's individual identity (Green 2009;McCarthy, Ramírez, and Robinson 2017;Vaes 2019) • Strengthen the product's group or institutional identity (Vaes 2019) • Strengthen the product's brand identity McCarthy, Ramírez, and Robinson 2017;Vaes 2019) • Increase the product's social power (McCarthy, Ramírez, and Robinson 2017) • Eliminate physically or mentally confronting moments, e.g. by adapting mainstream (Bispo and Branco 2009;Grieg, Keitsch, and Boks 2014;Vaes 2019) • Create additional benefits and experiences (Jacobson 2014;Vaes 2019) • Manage frequency and intensity of product use Vaes 2019• Redesign product significance through advances in materials and technology (Vaes 2019) • Change the meaning of the product and create symbolism (Bispo and Branco 2009;McCarthy, Ramírez, and Robinson 2017) • Create meaningful interactions with other products (Vaes 2019) • Use technological change (i.e. function remains, product design changes) • Create functional desire • Provide more choice and opportunities for personalisation (McCarthy, Ramírez, and Robinson 2017) • Balance functionality and aesthetics (Bichard, Coleman, and Langdon 2007) User empowerment • Make sure the product provides extra abilities for the product user (Vaes 2019) • Boost the user's social skill (Vaes 2019) • Directly name the stigma (Green 2009) • Raise the users' self-confidence while minimising the level of psychological and emotional distress (Partheniadis and Stavrakis 2019) • Empower the identification of the user with the product Jacobson 2014) • Enable the user to use the product without any...…”

“…by adapting mainstream (Bispo and Branco 2009;Grieg, Keitsch, and Boks 2014;Vaes 2019) • Create additional benefits and experiences (Jacobson 2014;Vaes 2019) • Manage frequency and intensity of product use Vaes 2019• Redesign product significance through advances in materials and technology (Vaes 2019) • Change the meaning of the product and create symbolism (Bispo and Branco 2009;McCarthy, Ramírez, and Robinson 2017) • Create meaningful interactions with other products (Vaes 2019) • Use technological change (i.e. function remains, product design changes) • Create functional desire • Provide more choice and opportunities for personalisation (McCarthy, Ramírez, and Robinson 2017) • Balance functionality and aesthetics (Bichard, Coleman, and Langdon 2007) User empowerment • Make sure the product provides extra abilities for the product user (Vaes 2019) • Boost the user's social skill (Vaes 2019) • Directly name the stigma (Green 2009) • Raise the users' self-confidence while minimising the level of psychological and emotional distress (Partheniadis and Stavrakis 2019) • Empower the identification of the user with the product Jacobson 2014) • Enable the user to use the product without any problems Cultural intervention • Use campaigns or interventions to address the issue of user stigma Vaes 2019• Manage social visibility or product endorsement (Vaes 2019) • Create a picture of normality (Bispo and Branco 2009) • Redesign the socio-social context • Provide educational services • Extend interpretation of what are assistive devices (Grieg, Keitsch, and Boks 2014) I like things attractive. Whatever adaptive equipment, I want it to look nice.…”

“…Overview of individual solutions.Planning and clarifying the taskIdentifying requirements with • the kano model(Brandl et al 2017) • qualitative approaches like tea parties, focus groups, observation, contextual inquiry, ethnography etc. (Bright and Coventry 2013; McCarthy, Ramírez, and Robinson 2017) • the Reversed MoSCoW Method (Spiru et al 2019) • the Feature Matrix (Woodcock, Osmond, and Holliday 2020) Evaluation Measuring stigma with • the Divergency (Abel and Satterfield 2018) and the Connectivity Model (Kang and Satterfield 2009) • Perceived Stigmatization Questionnaire (Lawrence et al 2010) • Environmental psychology method 'room effect' (Renda et al 2016) • Product Appraisal Model for Stigma (Vaes 2019) Measuring appraisal using focus groups (McNeill and Coventry 2015)Throughout the whole process • Design guideline for assistive devices(Bright and Coventry 2013) • Method to combine co-design and additive manufacturing(Gherardini et al 2020) • Participatory design through workshops(McCarthy, Ramírez, and Robinson 2017) • MATUROLIFE (smart materials in e-textiles)(Moody and Cobley 2020) • Design for Social Accessibility using method cards • Product Appraisal Model for Stigma and Product Intervention Model for Stigma(Vaes 2019) • Empathic Design(Thomas and McDonagh 2013)…”

"We come together as one...and hope for solidarity to live on"

“…While literature surrounding the use of digital technologies on IDEVASW specifically is limited, HCI has explored various other spaces of commemoration, activism and anti-stigma work in various contexts. For example, researchers have explored issues of stigma related to people living with HIV [58], HIV disclosure on same sex dating apps [71], weight loss bloggers [48], the role of participatory design to address stigma experienced by adolescents with Type 1 Diabetes [42], or the ways in which perceived visibility, legal risk, and social stigma affect online discussions of illicit drug use [9]. Others looked towards the restorative properties of online spaces in relation to socioeconomic stigma [50], or more specifically at the kinds of design choices that can be made to develop a mobile application for victims of human trafficking, where a particular focus was given to the stigma these people were experiencing [67].…”