Symbolic and practical facets in the use and production of home medical technology: the example of blood pressure monitoring

This thesis was submitted for the award of Doctor of Philosophy and was awarded by Brunel University LondonThe value to consider user needs throughout the development of medical devices has been acknowledged in the field of health technology assessment. Yet, user needs are narrowly conceptualised and are mainly examined from an ergonomic perspective. By focusing on the user-device interaction per se with a view to detect use errors and to create design solutions that promote intended use, the dominant approach to user needs research fails to adequately elaborate upon symbolic and practice-related dimensions in the user-technology relationship. Moreover, whilst the examination of user needs from a User standpoint is clearly required, it is also crucial to investigate how the medical device industry understands and addresses this issue, since it is these understandings that will eventually be projected onto the technology. The present research sought to provide a cross-actor account on the issue of user needs by examining the perspectives of two key stakeholders: the users and the medical device manufacturer. Using the example of home blood pressure (BP) monitoring, a qualitative programme of research explored, on the one hand, the process of integrating home blood pressure monitors (HBPMs) into daily life as well as the elements that are conducive to building trust in this technology, and on the other, the practices the medical device manufacturer adopts to capture its users and their needs. The results suggest that people engage with home BP monitoring in an effort to develop an experiential understanding of their health condition reproducing the dominant discourse around the benefits of self-care. Nevertheless, communicating this practice outside the home was not always without tension since concerns around the ascription of undesired identities were expressed. Home measurements were occasionally performed to check the dependability of technology – arguably an unintended device use – indicating the importance of establishing trust in the artefact. Building trust in HBPMs appeared to be a multifaceted phenomenon that was not limited to the perceived trustworthiness of the technology but implicated a network of other trustworthy relationships with humans, institutions and technologies. Medium-to-large medical device manufacturers appear to appreciate the value of a user needs-informed approach to medical device development employing a series of routes, more or less direct and formalised, to reach their user. The challenge for the industry is to synthesise the evidential base deriving from individual user studies to create a higher order knowledge base. The term ‘symbolic’ – also employed in the title of this thesis – signifies people’s representations, reasoning and meanings constructed around the use or production of home medical technology whilst the term ‘practical’ (or practice-related) refers to actions, activities, and routines pertaining to these two aspects.Engineering and Physical Sciences Research Council (EPSRC

Conversations about food allergy risk with restaurant staff when eating out: A customer perspective

A significant proportion of food-induced allergic reactions occur whilst dining outside the home, often due to failures in communication. This study aimed to examine the nature of conversations about risk that customers with food allergies have with restaurant staff when eating out. A secondary analysis of qualitative data, generated through interviewing 39 consumers with severe food allergies across three primary studies, was conducted. Thematic analysis was used to process the data. Conversations with staff about risk were commonly initiated under circumstances of uncertainty, unfamiliarity and lack of knowledge and information. Re-establishing a ‘contract of care’ with familiar food venues and perceived shortcomings in early interactions with staff were further drivers of initiating risk conversations. Two major constraints to risk conversations were identified: being seen as ‘fussy’ or as a ‘nuisance’. To avoid them being perceived as ‘fussy’ by asking questions about food, consumers framed their conversations with staff in terms of risk, revealing their allergy and its possible impact on health to validate their enquiries. Paradoxically, declaring the allergy and seeking staff acknowledgment of the severity of the condition could make participants feel that they were perceived by staff as a nuisance. These dilemmas sometimes limited conversations and constrained customers' risk management. Experiencing trustworthy interactions with staff was not only contingent on evidence of their knowledge about the food contents and understanding of food allergies but was also based on manifestations of genuine customer care. When managing a food allergy outside the home, establishing risk and safety are products of, and are embedded within, relations and interactions with others. Risk conversations seek to establish trustworthy interactions as the basis on which safety can be maximised and risks – both health and social – minimised

Supporting primary school children with Juvenile Idiopathic Arthritis: A qualitative investigation of teaching staff experiences

Background: Juvenile Idiopathic Arthritis (JIA) has a deleterious impact on numerous areas of children’s lives including school functioning. This study moves beyond eliciting child reports of school functioning to examine teaching staff’s experiences of supporting a child with JIA in school. Methods: Fifty-one UK based teaching staff with experience of supporting a child aged 7-11 years with JIA in school were recruited. Participants completed an online qualitative survey regarding their perceptions and experiences of supporting a child with JIA in school, with a sub-sample of 9 participants completing a subsequent telephone interview to explore responses in greater detail. Survey and interview data were analyzed using the conventional approach to qualitative content analysis. Results: Analyses generated 4 themes: (1) communicating, (2) flexing and adapting, (3) including and (4) learning and knowing. Findings highlighted the importance of clear communication between teaching staff and parents in addition to the need for teaching staff to provide individualized support for children with JIA which maximized their inclusion within the class. Conclusions: This paper provides new knowledge regarding how teaching staff adopt proactive and creative strategies to support children with JIA, often in the absence of ap-propriate training, identifying support needs and resources for teaching staff

The way I am treated is as if I am under my mother’s care : qualitative study of patients’ experiences of receiving hospice care services in South Africa

CITATION: Vasileiou, K., Smith, P. & Kagee, A. 2020. The way I am treated is as if I am under my mother’s care : qualitative study of patients’ experiences of receiving hospice care services in South Africa. BMC Palliative Care, 19:95, doi:10.1186/s12904-020-00605-1.The original publication is available at https://bmcpalliatcare.biomedcentral.comBackground: Research on the patient experience of receiving palliative care across a number of settings is increasing, but the majority of these investigations are situated within the context of developed countries. There is limited research from resource-limited countries, especially with regard to patients with cancer who receive hospice care. The present study explored the lived experience of attending hospice care facilities in South Africa to develop a bottom-up understanding from the perspectives of patients themselves. Methods: A qualitative cross-sectional study was designed to examine how patients experienced receiving hospice care We conducted in-depth, semi-structured interviews with thirteen, purposively selected patients living with terminal cancer and receiving in-patient or day care palliative services from a hospice organisation in South Africa. We used inductive thematic analysis to analyse the data. Results: We identified three themes that reflected a process of transformation that was experienced by participants during their engagement with the hospice services. The first theme describes participants’ initial reluctance to be linked to the hospice as a result of the stereotypic perceptions of hospice as being associated with death and dying. The second theme presents the perceived positive impact on patients’ physical and psychosocial wellbeing which resulted from the highly valued interactions with staff and other patients as well as patients’ engagement with creative activities. The final theme delineates the transformation of hospice into a second ‘family’ and ‘home’ and the restoration of an identity that expands beyond the ‘sick’ role. Conclusions: Receiving hospice care that sensitively attends to patients’ psychosocial and physical needs helps people to re-create a sense of homeliness within the world, re-orient themselves toward a meaningful life and reconfigure their relationship with self. Patient experience of receiving hospice care in South Africa does not appear dissimilar to that reported by patients in resource-rich countries, suggesting underlying commonalities. There is a need for raising awareness and educating the public about what palliative care can offer to those in need. Public health campaigns could help reduce the stigma attached to palliative care, deflect negative perceptions, and communicate the benefits for patients, families and communities in culturally sensitive ways.https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-020-00605-1Publishers' Versio

The production and use of evidence in health care service innovation:a qualitative study

The focus of this article is on a range of concepts of evidence employed by health care innovators in pursuing service innovations and in demonstrating their success. In-depth, semi-structured interviews were conducted with 18 key informants in the United Kingdom who had won Health Service Journal awards for successfully implementing 15 service innovations. Four concepts of evidence were identified: (a) evidence of effectiveness—both direct and indirect, (b) evidence of efficiency, (c) evidence of innovation acceptance, and (d) evidence of relevance. The results suggest that the innovators articulated evidential concepts from the main approaches prevailing in the British National Health Service, namely clinical trials and improvement cycles. Most aspired to “better” evidence than they were able to obtain, while the approach to evidence gathering was very pragmatic and was more aligned with the improvement-cycle framework. Developing supporting mechanisms for assisting innovation evaluation is an important challenge if service innovation is to be routinely attempted and achieved in health care. </jats:p

Experiences of Loneliness Associated with Being an Informal Caregiver: A Qualitative Investigation

Although providing care to a family member or friend may provide psychological benefits, informal (i.e., unpaid) caregivers also encounter difficulties which may negatively affect their quality of life as well as their mental and physical health. Loneliness is one important challenge that caregivers face, with this psychological state being associated with morbidity and premature mortality. Although previous research has identified loneliness as an issue associated with being an informal caregiver, there is a paucity of evidence that attempts to understand this phenomenon in depth. This study aimed to examine informal caregivers' reflections on, and accounts of, experiences of loneliness linked to their caregiving situation. As part of a cross-sectional, qualitative study, sixteen semi-structured interviews were conducted with 8 spousal caregivers, 4 daughters caring for a parent, 3 mothers caring for a child (or children), and 1 woman looking after her partner. The cared-for persons were suffering from a range of mental and physical health conditions (e.g., dementia, frailty due to old age, multiple sclerosis, depression, autism). Data were analyzed using an inductive thematic analysis. Experiences of loneliness were described by reference to a context of shrunken personal space and diminished social interaction caused by the restrictions imposed by the caregiving role. Loneliness was also articulated against a background of relational deprivations and losses as well as sentiments of powerlessness, helplessness, and a sense of sole responsibility. Social encounters were also seen to generate loneliness when they were characterized by some form of distancing. Though not all sources or circumstances of loneliness in caregivers are amenable to change, more opportunities for respite care services, as well as a heightened sensibility and social appreciation of caregivers' valued contributions could help caregivers manage some forms of loneliness

Everything we do, everything we press: Data-driven remote performance management in a mobile workplace

© 2018 Copyright is held by the owner/author(s). This paper examines how data-driven performance monitoring technologies affect the work of telecommunications field engineers. As a mobile workforce, this occupational group rely on an array of smartphone applications to plan, manage and report on their jobs, and to liaise remotely with managers and colleagues. These technologies intend to help field engineers be more productive and have greater control over their work; however they also gather data related to the quantity and effectiveness of their labor. We conducted a qualitative study examining engineers' experiences of these systems. Our findings suggest they simultaneously enhance worker autonomy, support co-ordination with and monitoring of colleagues, but promote anxieties around productivity and the interpretation of data by management. We discuss the implications of datadriven performance management technologies on worker agency, and examine the consequences of such systems in an era of quantified workplaces

When open data closes the door:A critical examination of the past, present and the potential future for open data guidelines in journals

Opening data promises to improve research rigour and democratize knowledge production. But it also presents practical, theoretical, and ethical considerations for qualitative researchers in particular. Discussion about open data in qualitative social psychology predates the replication crisis. However, the nuances of this ongoing discussion have not been translated into current journal guidelines on open data. In this article, we summarize ongoing debates about open data from qualitative perspectives, and through a content analysis of 261 journals we establish the state of current journal policies for open data in the domain of social psychology. We critically discuss how current common expectations for open data may not be adequate for establishing qualitative rigour, can introduce ethical challenges, and may place those who wish to use qualitative approaches at a disadvantage in peer review and publication processes. We advise that future open data guidelines should aim to reflect the nuance of arguments surrounding data sharing in qualitative research, and move away from a universal “one-size-fits-all” approach to data sharing. This article outlines the past, present, and the potential future of open data guidelines in social-psychological journals. We conclude by offering recommendations for how journals might more inclusively consider the use of open data in qualitative methods, whilst recognizing and allowing space for the diverse perspectives, needs, and contexts of all forms of social-psychological 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