Sugar Ka Saathi – A Case Study Designing Digital Self-management Tools for People Living with Diabetes in Pakistan

This paper presents the results of an iterative participatory process to design a smart self-management tool for less-literate people living with diabetes in Pakistan. Initially, interviews and focus groups with sixty-nine people living with diabetes identified issues that they face when self-managing including un-controllable factors, lack of diabetes awareness, low-tech mobile phones, and poor internet availability. We developed personas grounded in the scoping results and adjusted our PD approach to focus on more tangible design artefacts before running narrative scoping PD sessions. Working from older, illiterate persona, we designed a phone-line delivered Interactive Voice Response (IVR) system. We developed a functional IVR Prototype “Sugar ka Saathi” (Diabetes Companion) with input from a group of 4 Pakistan-based healthcare professionals, to act as a design probe in the PD process. We tested the IVR probe with fifty-seven of the original scoping participants which validated the knowledge transferred by the IVR and its acceptability. Invisible design videos were shown to elaborate the IVR and community concept to thirteen participants through two filmed videos using our existing persona characters from the scoping studies, these videos helped to engage older people with diabetes in PD sessions

Implications of Synchronous IVR Radio on Syrian Refugee Health and Community Dynamics

With 1,033,513 Syrian refugees adding a strain on the Lebanese healthcare system, innovation is key to improving access to healthcare. Our previous work identified the potential for technology to improve access to antenatal care services and increase refugee agency. Using (1) paper mock ups and a mobile based prototype, (2) process mapping, (3) focus groups and interviews and (4) key informant meetings, we explored the concept of refugee led community radio shows to deliver peer-led healthcare. We observed the influence of community radio shows on Syrian refugee health education, community dynamics and community agency in relationships between healthcare providers and refugees. Refugees were positively impacted through situating the technology within the community. We highlight issues around trust, agency, understanding, sel-forganization and privacy that resulted from running the shows through mock ups and a mobile based prototype. Our findings inform future work in community run radio shows

Enabling the Participation of People with Parkinson's and Their Caregivers in Co-Inquiry around Collectivist Health Technologies

While user participation is central to HCI, co-inquiry takes this further by having participants direct and control research from conceptualisation to completion. We describe a co-inquiry, conducted over 16 months with a Parkinson's support group. We explored how the participation of members might be enabled across multiple stages of a research project, from the generation of research questions to the development of a prototype. Participants directed the research into developing alternative modes of information provision, resulting in ‘Parkinson’s Radio’ — a collectivist health information service produced and edited by members of the support group. We reflect on how we supported participation at different stages of the project and the successes and challenges faced by the team. We contribute insights into the design of collectivist health technologies for this group, and discuss opportunities and tensions for conducting co-inquiry in HCI research

Connecting Those That Care: Designing for Transitioning, Talking, Belonging and Escaping

This is the author accepted manuscript. The final version is available from ACM via the DOI in this record.Care provision in many nations increasingly relies on the work of informal, or non-professional, carers. Often these carers experience substantial disruptions and reductions to their own sociality, weakened social support networks and, ultimately, a heightened risk of social isolation. We describe a qualitative study, comprised of interviews, design workshops and probes, that investigated the social and community support practices of carers. Our findings highlight issues related to becoming and recognising being a carer, and feelings of being ignored by, and isolated from, others. We also note the benefits that sharing between carers can bring, and routes to coping and relaxing from the burdens of care. We conclude with design considerations for facilitating new forms of digitally mediated support that connect those that care, emphasising design qualities related to transitioning, talking, belonging and escaping

Indigenous women managing pregnancy complications in rural Ecuador

Previous research has explored the potential use of digital health to support maternal health in the Global South highlighting the importance of understanding the socio-cultural context to inform system design. However, the experiences of indigenous women managing pregnancy complications in Latin America remain underexplored in HCI. We present a qualitative study with 25 indigenous pregnant women in an Ecuadorian rural community looking at their experiences during complications, their antenatal care visits and their access and use of technologies. Our findings highlight key barriers that hinder the use of antenatal care services and influence women's experiences managing complications. Based on the findings, we present opportunities for digital health centered on indigenous women to enhance antenatal care in rural Ecuador

Supporting Real-time Peer-Mentoring of Rural Volunteers

Telephone-driven community forums have been a widely proposed solution to address the unreliable internet connectivity and large geographic scope that characterizes many international NGO contexts. Primarily, these applications support asynchronous activities, such as information portals or forums to access rural journalism, but opportunities for real-time experience sharing remain largely under-explored. In this paper, we explore the potential of such forums to support remote mentoring of NGO volunteers, a practice that requires synchronous, dialogical formats for experience sharing and peer discussion. We engaged 28 participants from a rural Indian NGO in the design of peer-mentoring sessions that leverage synchronous audio discussions, using the structure and format of traditional talk-show radio as a starting point. The participants favored an entertaining approach to mentoring and discussed the logistics required to achieve this within their resource constraints. We conclude with design implications for designing media-driven community engagement platforms and the ethical challenges around protecting marginalized community interests

Digital mediation of candidacy in maternity care: managing boundaries between physiology and pathology

This paper brings together scholarship across sociology, media and communication, and human computer interaction to explore the intersection of digital health and the maternity care system. We draw on data (including interviews, focus groups, observations, and analyses of digital media content) from 19 studies involving over 400 women to explore women's experiences of using different forms of digital support such as the Internet, mobile technologies (apps and text messaging), social media, and remote monitoring devices in their reproductive journeys. We use a best fit approach to analysis, mapping our findings to the candidacy framework and notions of trajectory work to understand how women engage in digital health practices to negotiate boundaries between physiology and pathology and to enter dialogue with maternity services during conception, pregnancy and the postnatal period. We propose an integrated revised conceptual framework which explicates intersections between digital and care practices, and micro-level negotiations between women and professionals in the maternal health context. Our revised framework retains the dimensions of candidacy, but it introduces a precursor to the identification of candidacy in the form of ‘understanding normality’. It identifies distinct forms of digital work (e.g. information work, navigation work, machine work) which operate across the candidacy dimensions that women (and partners at times) engage in to negotiate legitimacy when entering into encounters with the maternity care system. Operating conditions (norms around expert motherhood; neoliberal discourses around health optimisation, risk and responsibilisation) provide a broader macro-level context, influencing the micro-level dialogic processes between women and healthcare professionals. Our synthesis highlights digital mediation as a useful filter to understand care systems, distribution of lay/professional responsibilities, relational practices and the (dis)enablement of candidacy

Exploring the Digital Support Needs of Caregivers of People With Serious Mental Illness

In low-and middle-income countries like India, people with severe mental illness (PSMI) rely on their families as a primary source of care, given the lack of support from healthcare systems. The demanding nature of caregiving places significant physical and mental demands on caregivers, who are the primary source of support to PSMI. We explore how caregivers in under-resourced settings can be better supported through everyday digital technologies. We conducted interviews with caregivers (from urban and rural India), as well as workshops with professionals from Indian NGOs that work directly with PSMIs. We found that technology has the potential to (1) provide carer-centred support that empowers carers who experience stigma and issues with existing support networks; (2) provide support for carers to overcome barriers and progress in the recovery of the PSMI. We conclude with design considerations, proposing how an online peer community can leverage carers’ expertise to actualise support provision

Embodied negotiations, practices and experiences interacting with pregnancy care infrastructures in South India

Behavior change and improving health literacy based on normative ideals of motherhood is a dominant paradigm to address maternal health challenges. However, these ideals often remove women's control over their bodies overlooking how the bodily experiences of pregnancy are socially and culturally constructed. We report on 27 interviews with pregnant women and nursing mothers in rural and semi-urban areas of South India, and six focus groups with 23 frontline health workers as secondary data. We explore how the embodied pregnancy experiences are influenced and negotiated by the socio-cultural context and existing care infrastructures. Our findings highlight how the ways of seeing, knowing, and caring for a body of a pregnant woman through often conflicting norms, beliefs and practices of medicine, nourishment and care actively shape the experiences of pregnancy. We open up a space for novel opportunities for digital health technologies to enhance women's embodied experiences and pregnancy care infrastructures in the Global South