Guyanese expatriate women ask: “is it a touch of sugar?”

Eight Guyanese expatriate women, who had been living in and around London for decades, came together driven by a participatory inquiry approach. Do we just have ‘a touch of sugar’ or is diabetes a serious affliction were questions asked. The study’s objective was to find answers to these questions. Three nurse academics, one a Guyanese / English woman herself, researched alongside participants. After several years of storytelling and group discussion (2010-2015), the women recognised that when they connected socially, the practical effect of togetherness was empowerment. Researching with participants fostered new understandings of diabetes and improved self-management of this chronic condition. This was achieved through the collaborative character of the inquiry and as a practical response to the problems women were facing. They continue to engage with each other and are reaching out to the wider UK Guyanese community. They have a strong voice about living well with diabetes and strongly reject the myth that diabetes is only ‘a touch of sugar.

Applying discursive approaches to health psychology

Objective: The aim of this paper is to outline the contribution of two strands of discursive research, glossed as ‘macro’ and ‘micro’, to the field of health psychology. A further goal is to highlight some contemporary debates in methodology associated with the use of interview data versus more naturalistic data in qualitative health research. Method: Discursive psychology is a way of analysing talk as a social practice which considers how descriptions are put together and what actions they achieve. Results: A selection of recent examples of discursive research from one applied area of health psychology, studies of diet and obesity, are drawn upon in order to illustrate the specifics of both strands. Whilst both approaches focus on accountability, ‘macro’ discourse work is most useful for identifying the cultural context of talk and can demonstrate how individuals are positioned within such discourses, and examine how such discourses are negotiated and resisted. ‘Micro’ discursive research pays closer attention to the sequential organisation of constructions and focuses on naturalistic settings which allow for the inclusion of an analysis of the health professional. Conclusion: Diets are typically depicted as an individual responsibility in mainstream health psychology but discursive research highlights how discourses are collectively produced and bound up with social practices

Decolonizing Stigma and Diagnosis as Healing Work

In order to disrupt dominant understandings of health and well-being, and to confront systemic injustices that result in ongoing health inequities, stigma must be addressed from both within and beyond the realm of medical diagnosis. The individualistic nature of diagnosis, that is characteristic of Western medical approaches, often perpetuates stigma. The role of diagnosis in biomedicine, as well as the historicity of professions and disciplines in Westernized health-care, intersect with different hierarchies of power, identities, and knowledges through mechanisms that operate across local and global contexts. This paper argues that a decolonial approach to health research, practice and education offers an important lens through which to critically analyse these intersections of power, identities, and knowledges. Such an approach can help disrupt dominant understandings of health and well-being. To advance the argument, examples of decolonial thinking approaches and pedagogical methods from South Africa are provided

People, Land, Arts, Culture and Engagement: Taking Stock of the Place Initiative

This report serves as a point of entry into creative placemaking as defined and supported by the Tucson Pima Arts Council's PLACE Initiative. To assess how and to what degree the PLACE projects were helping to transform communities, TPAC was asked by the Kresge Foundation to undertake a comprehensive evaluation. This involved discussion with stakeholders about support mechanisms, professional development, investment, and impact of the PLACE Initiative in Tucson, Arizona, and the Southwest regionally and the gathering of qualitative and quantitative data to develop indicators and method for evaluating the social impact of the arts in TPAC's grantmaking. The report documents one year of observations and research by the PLACE research team, outside researchers and reviewers, local and regional working groups, TPAC staff, and TPAC constituency. It considers data from the first four years of PLACE Initiative funding, including learning exchanges, focus groups, individual interviews, grantmaking, and all reporting. It is also informed by evaluation and assessment that occurred in the development of the PLACE Initiative, in particular, Maribel Alvarez's Two-Way Mirror: Ethnography as a Way to Assess Civic Impact of Arts-Based Engagement in Tucson, Arizona (2009), and Mark Stern and Susan Seifert's Documenting Civic Engagement: A Plan for the Tucson Pima Arts Council (2009). Both of these publications were supported by Animating Democracy, a program of Americans for the Arts, that promotes arts and culture as potent contributors to community, civic, and social change. Both publications describe how TPAC approaches evaluation strategies associated with social impact of the arts in Tucson and Pima County. This report outlines the local context and historical antecedents of the PLACE Initiative in the region with an emphasis on the concept of "belonging" as a primary characteristic of PLACE projects and policy. It describes PLACE projects as well as the role of TPAC in creating and facilitating the Initiative. Based on the collective understanding of the research team, impacts of the PLACE Initiative are organized into three main realms -- institutions, artists, and communities. These realms are further addressed in case studies from select grantees, whose narratives offer rich, detailed perspectives about PLACE projects in context, with all their successes, rewards, and challenges for artists, communities, and institutions. Lastly, the report offers preliminary research findings on PLACE by TPAC in collaboration with Dr. James Roebuck, codirector of the University of Arizona's ERAD (Evaluation Research and Development) Program

Self-Expression and Sharing around Chronic Illness on TikTok

While prior work has investigated the benefits of online health communities and general purpose social media used for health-related purposes, little work examines the use of TikTok, an emerging social media platform with a substantial user base. The platform's multimodal capabilities foster creative self-expression, while the content-driven network allows users to reach new audiences beyond their personal connections. To investigate users' challenges and motivations, we analyzed 160 TikTok videos that center on users' first hand experiences living with chronic illness. We found that users struggled with a loss of normalcy and stigmatization in daily life. To contend with these challenges, they publicly shared their experiences to raise awareness, seek support from peers, and normalize chronic illness experiences. Based on our findings, we discuss the modalities of TikTok that facilitate self-expression around stigmatized topics and provide implications for the design of online health communities that better support adolescents and young adults.Comment: Paper accepted for the proceedings of the 2023 American Medical Informatics Association Annual Symposium (AMIA

MAPS OF MARGINALIZATION: EXPLORING THE HEALTHCARE EXPERIENCES OF MEN AND WOMEN WITH FIBROMYALGIA

This qualitative study explored the retrospective and ongoing healthcare experiences of men and women who have a diagnosis of fibromyalgia (FM), a contested, chronic, and gendered condition of unknown origin. The research question was: How do men and women who have a diagnosis of FM experience interactions with healthcare providers? The study, which was epistemologically rooted in the critical theories of feminist poststructuralism and intersectionality, blended constructivist grounded theory with a participatory component, an arts-based research methodology called body-map storytelling. Thirty-five participants were recruited from the Greater Toronto Area and Kitchener-Waterloo. Ten participants completed in-depth interviews while 25 participants completed body maps within a series of focus group sessions. Through analysis of the verbal and visual data, four key findings emerged. First, participants experienced compromised healthcare due to structural barriers and unsupportive attitudes of healthcare providers. Second, participants’ experiences of compromised healthcare were impacted by systems of embodied differences. Third, participants resisted the system of compromised healthcare through strategies of self-management. Finally, participants described their experiences of helpful clinical practices, as well as their suggestions for improving FM healthcare services. The study contributes crucial information for the transformation of healthcare policies, programs and clinical practices for the FM population. As a form of applied research, the study has also helped give voice to and empower a marginalized population

Changing my life one step at a time – using the Twelve Step program as design inspiration for long term lifestyle change

To explore how people manage and maintain life style change, we conducted interviews with eight members of different Twelve Step Fellowships with 2-23 years of recovery about how they maintain and develop their recovery in everyday life. They reported how identification, sharing, and routines are keys to recovery. Our lessons for design concerns how these concepts support recovery in a long term perspective: Sharing to contribute in a broader sense to the fellowship and to serve as an example for fellow members created motivation even after 20 years of recovery; reflecting over routines in recovery was essential since life is constantly changing and routines need to fit into everyday life; concrete gestures were helpful for some of the abstract parts of the recovery work, such as letting go of troubling issues. Design aimed to support maintenance of lifestyle change needs to open up for ways of sharing that allow users to contribute their experiences in ways that create motivation, and support users in reflecting over their routines rather than prompting them on what to do

Varied & Bespoke Needs of Caregivers: Organizing and Communicating Diabetes Care for Children in Era of DIY

Type 1 diabetes in children is a complex chronic condition that requires high levels of coordination among a range of caregivers in order to communicate and organize care for best health outcomes. We examined three types of care, at home, at school, and at the clinic, to explore the communication needs of a range of caregivers. Not only were there differences between types of caregiver, but there were also varied personal preferences for communication, different levels of knowledge regarding caregiving that required different forms of communication, and changes in child health leading to different care needs and communication styles. We frame these findings within the new trend of diabetes technologies that allow for cloud connected communication in order to show the need to respect varied and individual communication practices. Technologies that link current health data over the cloud may not have a one-size-fits-all solution for all caregivers, however, open-source DIY health trends may be a way towards supporting personalized communication needs

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

Narratives of brain injury and self-management after hospital discharge

Specific processes for supporting self-management, as prioritised in contemporary Western healthcare policy, generally focus on biomedical aspects of managing a condition that is constructed as a separate entity from the rest of a person’s life. However, uncertainties in supporting self-management for long term conditions like traumatic brain injury (TBI) persist, including a mismatch between patient and professional contexts, and under-theorisation of the concepts ‘self’ and ‘agency’. To better grasp these issues, I gathered accounts of TBI-related experiences since hospital discharge, using a qualitative longitudinal design. I specifically relied on narrative interviews with ten dyads, consisting of one person who had recently sustained a TBI and their chosen ‘significant other’ person, at two time intervals. I undertook iterative narrative analyses, initially identifying discourses portrayed by participants and tensions, conflicts or emotional connections across our interactions. I drew upon insights from Michael Bamberg’s positioning analysis of the self in brief moments of talk-in-interaction, and Judith Butler’s work on performativity, to explore how people are bound by positions or create possibilities within socially instituted and maintained norms and expectations. The findings illustrate how the subject position ‘you are your brain injury’ brings an agentive gap. The self is made and remade through co-constructed narrative scaffolds that shift in collaborative storytelling, enabling the (re)claiming of a desired sense of self. This research offers insights into dynamics of consistency and change, rather than the assumed disruption to the self, when cognitive and communicative functions alter following TBI. In conclusion, I suggest implications for healthcare professionals’ conceptualisation of supported self-management interactions. Rather than ‘having’ individualistic agency that is bolstered by the clinical intervention, agency is understood as a relational co-construction, offering a shift away from positioning of the ‘clinician as expert’ and opening possibilities to reaffirm a sense of self