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2021 ◽  
pp. 104973232110497
Author(s):  
Tom Palmer ◽  
Cynthia Waliaula ◽  
Geordan Shannon ◽  
Francesco Salustri ◽  
Gulraj Grewal ◽  
...  

Focusing only on biomedical targets neglects the important role that psychosocial factors play in effective diabetes self-management. This study aims to understand the lived experiences of children with Type 1 Diabetes (T1DM) in Kenya. Children ( n = 15) participated in focus group discussions and photo diary data collection. Focus group discussions and semi-structured interviews were also conducted with caregivers ( n = 14). We describe an adaptation to diabetes over time, identifying four overarching themes: knowledge and awareness, economic exclusion, the importance of social support, and striving for normality. Photo diaries are then categorized to explore daily realities of diabetes management. Children with T1DM in Kenya face varied barriers to care but can lead a “normal” and fulfilling life, provided adequate support is in place. To improve the lives of children with diabetes in this context and others like it, stakeholders must take note of children’s experiences and recognize their multidimensional needs.


Author(s):  
Shyamjeet Maniram Yadav ◽  
Saradindu Bhaduri

AbstractThere are divergent views among scholars and policymakers about the nature of permissible evidence for policymaking. It is often not feasible to construct a policy system exclusively based on objective research findings, particularly for rare diseases where conventionally accepted evidence remains a rarity. Evolutionary theories in such cases offer an overarching framework to represent the various heterodox understandings of what constitutes evidence and how evidence-based policies can be formulated under knowledge uncertainty. We conduct an empirical investigation of India’s rare disease policymaking endeavour in evolutionary perspective. The existing rare diseases policy architecture in India, in our view, reflects a ‘rationalistic’ framework. It intends to act only on ‘hard evidence’ to make, what may be called, an optimum decision, rather than initiating a ‘good enough’ policy decision based on existing (limited, soft) evidence and improving it incrementally through learning and trial-and-error. Our findings suggest that in the presence of ‘evidentiary vacuum’ and knowledge uncertainty, broadening the contours of epistemic communities, to include ‘lived experiences’ of the ‘lay’-stakeholders, can be effective in formulating an adaptive policy framework, which would ‘learn’ to better fit with the dynamic environment through inclusive deliberations, and trial-and-error.


2021 ◽  
Vol 14 (1) ◽  
pp. ep329
Author(s):  
Nikolaos Bogiannidis ◽  
Jane Southcott ◽  
Maria Gindidis

2021 ◽  
pp. 026377582110554
Author(s):  
Yaffa Truelove

This paper takes an embodied approach to the lived experiences and everyday politics of liminal neighborhoods and infrastructures in Delhi’s unauthorized colonies, which lack official entitlements to networked infrastructures such as water and sewerage. Bringing a feminist political ecology lens to critical infrastructure studies, I show how gendered social relations, subjectivities, and the unequal experience of urban liminality are tied to accessing water and its fragmented infrastructures beyond the network. In particular, liminal infrastructural space is produced in unauthorized colonies through not only these neighborhoods’ quasi-legal status and unequal access to urban water, but also through gendered discourses and the socially differentiated ways water infrastructures are co-produced, managed, and made livable by residents. As water is primarily accessed beyond the network via tubewells and tankers, I demonstrate how these fractured modalities ultimately constitute gendered infrastructural assemblages that enable water’s circulation across neighborhoods but also serve to deepen forms of gendered marginality and differentiation. Here, gendered infrastructural practices and labor to negotiate and supplement fragmented components of water infrastructure shape subjectivities and possibilities for social relations and urban claims-making. These infrastructural assemblages expose both the situated experience of urban liminality, as well as its transcendent possibilities.


2021 ◽  
pp. 205343452110634
Author(s):  
Kristina M Kokorelias ◽  
Stephanie Posa ◽  
Tracey DasGupta ◽  
Naomi Ziegler ◽  
Sander L Hitzig

Introduction The success of new patient navigation programs have mostly been described from the perspectives of patient outcomes. Little is known about how patient navigators interact with healthcare professionals in the community and in hospital settings. Methods A qualitative study using a phenomenological analysis was undertaken to depict the lived experiences of Ontario (Canada) healthcare providers who have interacted with a patient navigator. Semi-structured interviews were conducted with 42 healthcare professionals, including frontline care providers ( n = 25) and administrators ( n = 16) from hospital ( n = 21) and community care settings ( n = 21). Results Participants’ experiences were reflected in one overarching theme: role clarity and three emergent themes related to the overarching theme: (i) concerns over accountability of patient care (ii) trust (iii) attainable-but-not. Participants described an inconsistent understanding of the role of patient navigators which led to uncertainty regarding their role in patient care. The current nature of the healthcare system influenced participants’ belief in the sustainability of patient navigation model of care. Despite these experiences, participants felt that patient navigators could help healthcare providers care for patients by preventing potential crises from developing and enhancing their knowledge about services. Discussion This study expands our understanding of patient navigation programs by exploring the experiences and perceptions of healthcare professionals, thereby providing new perspectives into components that support the successful health outcomes of older adults being supported by a patient navigator. The implications of findings for research, clinical practice, and policy are described.


PLoS ONE ◽  
2021 ◽  
Vol 16 (11) ◽  
pp. e0260475
Author(s):  
Lasara Kariyawasam ◽  
Margarita Ononaiye ◽  
Chris Irons ◽  
Lusia Stopa ◽  
Sarah E. Kirby

Practicing compassion has shown to reduce distress and increase emotional well-being in clinical and non-clinical populations. The existing research is primarily focused on Western populations although the concepts of compassion are heavily influenced by Asian Buddhist views. There is a dearth of compassion research conducted particularly in the Asian context. Therefore, this study aimed to explore the views and lived experiences of compassion in Sri Lankan students, to understand whether compassion is a socially embraced construct in Sri Lanka, considering that Sri Lanka is a Buddhist influenced society. Participants’ views and lived experiences of compassion towards themselves and to/from others were also investigated, with a specific focus on their perceived inhibitors and facilitators of compassion. Aims were set to identify whether Western compassion-based practices could be successfully applied to Asian societies such as Sri Lanka. An Interpretative Phenomenological Analysis approach was used to obtain and analyse qualitative data from a convenience sample of 10 Sri Lankan students, recruited from a Psychology course. The phenomenological analysis of the semi-structured face-to-face interviews elicited three predominant themes: What compassion means to me, what I make of it, and compassion through facilitators and inhibitors. The findings suggested that participants shared a similar understanding of the concept of compassion as reflected in the Western definitions. Experiences and views of compassion were shaped by several factors including religion, culture, society, and upbringing. In general, this study revealed that participants were well aware of the concept of compassion as well as its impact on their psychological well-being. Despite this, inhibitors existed in experiencing compassion. The religious and collectivistic-cultural influences need to be further explored and taken into account when implementing Western compassion-based practices to non-Western contexts such as Sri Lanka.


2021 ◽  
pp. 102831532110527
Author(s):  
Sanfeng Miao ◽  
Haishan (Sam) Yang

This study examined lived experiences of foreign-born student affairs professionals (SAPs) in the United States and Canadian higher education. We sought to understand foreign-born SAPs’ impacts on higher education internationalization and what their professional experiences inferred about the level of international engagement in the field of student affairs. The findings from 35 completed interviews unveiled foreign-born SAPs’ enthusiasm and capacities in contributing to internationalization work, particularly in international student services and international and intercultural education for domestic students and peers. However, their rocky journeys to attain visas to enter and stay in the field of student affairs indicated their misplaced functionalities and signaled a missed opportunity for higher education institutions. It is recommended that higher education institutions recognize the importance of internationalizing the SAP and creating a welcoming and supportive environment to further their internationalization efforts.


2021 ◽  
pp. 107808742110578
Author(s):  
Caleb Althorpe ◽  
Martin Horak

Is the Right to the City (RTTC) still a useful framework for a transformative urban politics? Given recent scholarly criticism of its real-world applications and appropriations, in this paper, we argue that the transformative promise in the RTTC lies beyond its role as a framework for oppositional struggle, and in its normative ends. Building upon Henri Lefebvre's original writing on the subject, we develop a “radical-cooperative” conception of the RTTC. Such a view, which is grounded in the lived experiences of the current city, envisions an urban society in which inhabitants can pursue their material and social needs through self-governed cooperation across social difference. Growing and diversifying spaces and sectors of urban life that are decoupled from global capitalism are, we argue, necessary to create space for this inclusionary politics. While grassroots action is essential to this process, so is multi-scalar support from the state.


2021 ◽  
Author(s):  
◽  
Bryony Cunningham-Pow

<p>This thesis is an anthropological exploration of Irritable Bowel Syndrome (IBS), and the first ethnographic study of people with IBS in New Zealand. It explores the illness experience of people with IBS and whether stigma plays a role within this experience. IBS is a gastrointestinal illness that affects 10-20% of New Zealand’s population. However, its aetiology is unknown, there is no cure, and the biomedical approach that informs its diagnosis and treatment is often incongruous with its lived experience. I posit that the illness experience of my participants and what is stigmatising for them must be understood not only in relation to its physical manifestations but also in relation to the biomedical and neoliberal influences that inform social expectations of the body and social participation. Further, participants experience their IBS simultaneously resisting and participating within these influences to make sense of and manage their illness in a way that aligns with their lived experiences.  All work within this thesis is my own except where otherwise stated.</p>


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