Background Pulmonary rehabilitation (PR) is an effective intervention for the management of people with chronic respiratory diseases, but the uptake of and adherence to PR programs is low. There is potential for mobile health (mHealth) to provide an alternative modality for the delivery of PR, overcoming many of the barriers contributing to poor attendance to current services. Objective The objective of this study was to understand the needs, preferences, and priorities of end users for the development of an adaptive mobile PR (mPR) support program. Methods A mixed methods (qualitative and quantitative) approach was used to assess the needs, preferences, and priorities of the end users (ie, patients with chronic respiratory disorders) and key stakeholders (ie, clinicians working with patients with chronic respiratory disorders and running PR). The formative studies included the following: (1) a survey to understand the preferences and priorities of patients for PR and how mobile technology could be used to provide PR support, (2) ethnographic semistructured interviews with patients with chronic respiratory disorders to gain perspectives on their understanding of their health and potential features that could be included in an mPR program, and (3) key informant interviews with health care providers to understand the needs, preferences, and priorities for the development of an mPR support program. Results Across all formative studies (patient survey, n=30; patient interviews, n=8; and key stakeholder interviews, n=8), the participants were positive about the idea of an mPR program but raised concerns related to digital literacy and confidence in using technology, access to technology, and loss of social support currently gained from traditional programs. Key stakeholders highlighted the need for patient safety to be maintained and ensuring appropriate programs for different groups within the population. Finding a balance between ensuring safety and maximizing access was seen to be essential in the success of an mPR program. Conclusions These formative studies found high interest in mHealth-based PR intervention and detailed the potential for an mPR program to overcome current barriers to accessing traditional PR programs. Key considerations and features were identified, including the importance of technology access and digital literacy being considered in utilizing technology with this population.
This paper examines how nineteen parents of children diagnosed with the inherited metabolic disorder, medium-chain acyl-coA dehydrogenase deficiency (MCADD), express their lived experience of the disorder on a closed New Zealand/Australia Facebook group. It shows how the diagnosis creates new geneticised subjects of both the child, and the parents who care for her, and that this diagnosis ties these families to the nation-state via the public health services. Bounded by fear that the disorder may present, their online identity is tied to the care of their asymptomatically, 'dis'ordered child, and exists simultaneously with that of other identities linked to the 'well' child. As cosmopolitan subjects they choose to move in and out of the socio-cultural environment constructed by the place in which they live and the health system linked to it, to engage with and in doing so, create an entirely new group based around a shared condition. I argue that these parents of children caught in limbo between pathology and health, engage in a voluntary and mutually hospitable set of relationships within this online support group, enabling them freedom from their biosocial identity in other aspects of their lives.
This special issue takes as its primary theoretical touchstone cultural, queer, and feminist theorist Gloria Anzaldúa's La Frontera (2007), a text that interrogated Anzaldúa's own 'mestiza consciousness' to theorise the multiplying and hybridising potential of the US-Mexico borderlands and the various forms of living that emerged within. Though her writing was always critically and politically engaged, resistance, for Anzaldúa, was not enough, too mired in an opposition defined by the oppressor. 'Th[at] counterstance, ' she wrote, is 'a step towards liberation from cultural domination. But it is not a way of life' (Anzaldúa 2007, 78). Instead, she turned attention to the unpredictable, emergent possibilities that take shape in the borderlands, born out of an embrace of ambiguity. For Anzaldúa, it is precisely the state of being caught between worlds that creates the conditions of possibility for alternative ways of seeing, knowing, and existing. Although hers was a heavily psychologised rendering, subsequent developments by feminist scholars have further filled in the social and political potential of the borderlands concept (Icaza 2020; Lugones 1992). Feminist philosopher Maria Lugones offers a particularly rich extension of Anzaldúa's writing, highlighting how acts of resistance from the borderlands, if seen as processual, become parts of a greater collective movement for change. It is thus both Alzaldua's theory of the borderlands, and the conversations it has provoked, that provides the conceptual orientation for this special issue of Sites.When the four of us gathered in May of 2019 to coordinate that year's Somaa (Society of Medical Anthropology of Aotearoa) symposium, we sought a theme that could explore the porosity of bodies -biological, institutional, geographic, and otherwise -and engage with their unsettled, transitional nature. Anzaldúa's
Photoessays bridge the borders between the text and the image, much as light and shadow combined transform a flat picture into a three-dimensional object. In this photo essay I trace the invisible borders tracked in daily sanctioned walks. This forms a truncated ethnographic journey into the suburban environment during a global pandemic, one hour a day. Belonging, home, care and nation in Aotearoa New Zealand are compressed in both space and time; less than a year; less than two square kilometres, a single suburb, one neighbourhood straddling three ‘zones’. Teddy bears stuffed in windows, painted stones laid in forests, and messages to essential workers reveal values and hoped for outcomes embodied in concrete, plastered cladding and trees. The environment becomes an artistic landscape, a canvas to express wishes, hopes and dreams of who we are and hope to be, during times when borders and borderlands, both bodily and institutional, are unmade and remade.
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