What matters to older people with assisted living needs? A phenomenological analysis of the use and non-use of telehealth and telecare

Abstract

Telehealth and telecare research has been dominated by efficacy trials. The field lacks a sophisticated theorisation of [a] what matters to older people with assisted living needs; [b] how illness affects people's capacity to use technologies; and [c] the materiality of assistive technologies. We sought to develop a phenomenologically and socio-materially informed theoretical model of assistive technology use. Forty people aged 60-98 (recruited via NHS, social care and third sector) were visited at home several times in 2011-13. Using ethnographic methods, we built a detailed picture of participants' lives, illness experiences and use (or non-use) of technologies. Data were analysed phenomenologically, drawing on the work of Heidegger, and contextualised using a structuration approach with reference to Bourdieu's notions of habitus and field. We found that participants' needs were diverse and unique. Each had multiple, mutually reinforcing impairments (e.g. tremor and visual loss and stiff hands) that were steadily worsening, culturally framed and bound up with the prospect of decline and death. They managed these conditions subjectively and experientially, appropriating or adapting technologies so as to enhance their capacity to sense and act on their world. Installed assistive technologies met few participants' needs; some devices had been abandoned and a few deliberately disabled. Successful technology arrangements were often characterised by 'bricolage' (pragmatic customisation, combining new with legacy devices) by the participant or someone who knew and cared about them. With few exceptions, the current generation of so-called 'assisted living technologies' does not assist people to live with illness. To overcome this irony, technology providers need to move beyond the goal of representing technology users informationally (e.g. as biometric data) to providing flexible components from which individuals and their carers can 'think with things' to improve the situated, lived experience of multi-morbidity. A radical revision of assistive technology design policy may be needed.

Thinking with Care Infrastructures: People, Devices and the Home in Home Blood Pressure Monitoring

“…Previous scholarship has discussed these forms of mediation work in both gendered and generational terms (Greenhalgh et al 2013, Oudshoorn, 2012, Wyatt et al 2005) but here we found that these might cut across such distinctions. Thinking of a care infrastructure helps keep these contributions in view.…”

“…The emplacement of blood pressure monitors mediated their use (as in Hodgetts et al 2011) and non-use (see also Greenhalgh et al 2013). Apart from the networking capacities of devices, the more mundane fact that most monitors could run on batteries rather than mains electricity and were relatively small meant they were reasonably portable.…”

“…In another interview a young woman recounted that her husband had bought a monitor for her in part to persuade her to take her blood pressure seriously. These examples of the providing or lending of monitors resonate with work on the mediation of older people's technology use in domestic settings (Greenhalgh et al 2013, Wyatt et al 2005, where household members and wider personal networks may provide and set up technologies. Notably in the examples we have recounted mediation flows both down as well as up generations.…”

Involving Citizen-Patients in the Development of Telehealth Services: Qualitative Study of Experts’ and Citizen-Patients’ Perspectives (Preprint)

“…However, telehealth raises several challenges, including e-literacy, confidentiality and privacy, patient's data protection, and the medicalization of the living space, in addition to the symbolism that technology might endorse for some people or communities [12][13][14][15]. In the same vein, telehealth also raises issues related to digital democracy and the right of all citizens to equally benefit from advances made in digital health, which leads several authors to call for a better consideration of the perspectives of people and communities who are, or could be, affected by these issues [12,[15][16][17][18][19].…”

“…In the same vein, telehealth also raises issues related to digital democracy and the right of all citizens to equally benefit from advances made in digital health, which leads several authors to call for a better consideration of the perspectives of people and communities who are, or could be, affected by these issues [12,[15][16][17][18][19]. In order to overcome such issues, at least in part, the idea of involving citizens-patients (the term refers to patients or their representatives, their family, as well as citizens, public and communities who are actual or potential users of health services) in the decisions concerning the development of telehealth services has been proposed [19][20][21][22].…”