The paradox of haemodialysis: the lived experience of the clocked treatment of chronic illness.

Studies exploring the relationship between time and chronic illness have generally focused on measurable aspects of time, also known as linear time. Linear time follows a predictable, sequential order of past, present and future; measured using a clock and predicated on normative assumptions. Sociological concepts addressing lifecourse disruption following diagnosis of chronic illness have served to enhance the understanding of lived experience. To understand the nuanced relationship between time and chronic illness, however, requires further exploration. Here, we show how the implicit assumptions of linear time meet in tension with the lived experience of chronic illness. We draw on interviews and photovoice work with people with end-stage kidney disease in receipt of in-centre-daytime haemodialysis to show how the clocked treatment of chronic illness disrupts experiences of time. Drawing on concepts of 'crip' and 'chronic' time we argue that clocked treatment and the lived experience of chronic illness converge at a paradox whereby clocked treatment allows for the continuation of linear time yet limits freedom. We use the concept of 'crip time' to challenge the normative assumptions implicit within linear concepts of time and argue that the understanding of chronic illness and its treatment would benefit from a 'cripped' starting point.

Progressing the understanding of chronic illness and its treatment: A post-human, ethological understanding of haemodialysis.

Haemodialysis is a common treatment option offered internationally for people requiring kidney replacement therapy. Research exploring haemodialysis is predominantly clinical and quantitative, and improvements to its provision and receipt tends also to be clinically focused. In recent years, however, a number of studies have sought to explore the lived experience of haemodialysis. These studies tend to use semi-structured interviews and present descriptive findings. Such findings serve to raise the profile of patient perspectives and encourage thinking beyond the clinical gaze. To progress this, we apply a post-humanism approach to the understanding of the receipt of haemodialysis. Drawing on findings from a study to explore the experience and impact of in-centre, daytime, haemodialysis we follow Fox and Alldred's ethological toolkit to provide a post-human analysis of haemodialysis. In doing so we argue that haemodialysis exists as a heterogenous and changeable assemblage of multiple and fluid, human and non-human factors that has the capacity to affect. Here we outline this post-human approach and the impact it has for understanding not just haemodialysis but also the receipt of treatment for other chronic illnesses.

The NightLife study - the clinical and cost-effectiveness of thrice-weekly, extended, in-centre nocturnal haemodialysis versus daytime haemodialysis using a mixed methods approach: study protocol for a randomised controlled trial.

BACKGROUND: In-centre nocturnal haemodialysis (INHD) offers extended-hours haemodialysis, 6 to 8 h thrice-weekly overnight, with the support of dialysis specialist nurses. There is increasing observational data demonstrating potential benefits of INHD on health-related quality of life (HRQoL). There is a lack of randomised controlled trial (RCT) data to confirm these benefits and assess safety. METHODS: The NightLife study is a pragmatic, two-arm, multicentre RCT comparing the impact of 6 months INHD to conventional haemodialysis (thrice-weekly daytime in-centre haemodialysis, 3.5-5 h per session). The primary outcome is the total score from the Kidney Disease Quality of Life tool at 6 months. Secondary outcomes include sleep and cognitive function, measures of safety, adherence to dialysis and impact on clinical parameters. There is an embedded Process Evaluation to assess implementation, health economic modelling and a QuinteT Recruitment Intervention to understand factors that influence recruitment and retention. Adults (≥ 18 years old) who have been established on haemodialysis for > 3 months are eligible to participate. DISCUSSION: There are 68,000 adults in the UK that need kidney replacement therapy (KRT), with in-centre haemodialysis the treatment modality for over a third of cases. HRQoL is an independent predictor of hospitalisation and mortality in individuals on maintenance dialysis. Haemodialysis is associated with poor HRQoL in comparison to the general population. INHD has the potential to improve HRQoL. Vigorous RCT evidence of effectiveness is lacking. The NightLife study is an essential step in the understanding of dialysis therapies and will guide patient-centred decisions regarding KRT in the future. TRIAL REGISTRATION: Trial registration number: ISRCTN87042063. Registered: 14/07/2020.

Reducing the carbon footprint of research: experience from the NightLife study.

BACKGROUND: As set out in the Climate Change Act (2008), the UK National Health Service (NHS) has made a commitment to halve greenhouse gas emissions by 2025 and reach net zero by 2050. Research forms a core part of NHS activity and reducing the carbon footprint of clinical trials is a core element of the National Institute for Health and Care Research Carbon Reduction Strategy (2019). KEY ARGUMENTS: However, support from funding organisations on how to achieve these targets is lacking. This brief communication article reports the reduction in the carbon footprint of the NightLife study, an ongoing multicentre randomised controlled trial assessing the impact of in-centre nocturnal haemodialysis on quality of life. CONCLUSION: By using remote conferencing software and innovative data collection methods, we demonstrated a total saving of 136 tonnes of carbon dioxide equivalent over three workstreams during the first 18 months of the study, following grant activation on 1 January 2020. In addition to the environmental impact, there were additional benefits seen to cost as well as increased participant diversity and inclusion. This work highlights ways in which trials could be made less carbon intensive, more environmentally sustainable and better value for money.

Biographical dialectics: The ongoing and creative problem solving required to negotiate the biographical disruption of chronic illness.

Here we propose the term 'biographical dialectics' as a sister term to 'biographical disruption' to capture the ongoing problem solving that characterises the lives of many people living with life limiting chronic illnesses. The paper is based on the experiences of 35 adults with end-stage kidney disease (ESKD) in receipt of haemodialysis. Photovoice and semi-structured interviews showed that ESKD and the use of haemodialysis was widely agreed to be biographically disruptive. In talking about and showing disruption through photographs the participants' ongoing problem solving was universal across their diverse experiences. 'Biographical disruption' and Hegalian dialectical logic, are drawn on to make sense of these actions and to further understand the personal and disruptive experience of chronic illness. Based on this, 'biographical dialectics' captures the work that is required to account for and manage the enduring and biographical impact of chronic illness that follows the initial disruption of diagnosis and continues as life progresses.

Becoming frail: A more than human exploration.

'Frailty' is increasingly used as a clinical term to refer and respond to a particular bodily presentation, with numerous scores and measures to support its clinical determination. While these tools are typically quantitative in nature and based primarily on physical capacity, qualitative research has revealed that frailty is also associated with a range of social, economic and environmental factors. Here, we progress the understanding of frailty in older people via a new materialist synthesis of recent qualitative studies of frailty and ageing. We replace a conception of frailty as a bodily attribute with a relational understanding of a 'frailty assemblage'. Within this more-than-human assemblage, materialities establish the on-going 'becoming' of the frail body. What clinicians refer to as 'frailty' is one becoming among many, produced during the daily activities and interactions of older people. Acknowledging the complexity of these more-than-human becomings is essential to make sense of frailty, and how to support and enhance the lives of frail older people.

Mapping the role of patient and public involvement during the different stages of healthcare innovation: A scoping review.

BACKGROUND: Patient and public involvement (PPI) has become increasingly important in the development, delivery and improvement of healthcare. PPI is used in healthcare innovation; yet, how it is used has been under-reported. The aim of this scoping review is to identify and map the current available empirical evidence on the role of PPI during different stages of healthcare innovation. METHODS: The scoping review was conducted in accordance with PRISMAScR and included any study published in a peer-reviewed journal between 2004 and 2021 that reported on PPI in healthcare innovation within any healthcare setting or context in any country. The following databases were searched: Medline, EMBASE, CINAHL, PsycInfo, HMIC and Google Scholar. We included any study type, including quantitative, qualitative and mixed-method studies. We excluded theoretical frameworks, conceptual, scientific or grey literature as well as discussion and opinion papers. RESULTS: Of the 87 included studies, 81 (93%) focused on or were conducted by authors in developed countries. A wide range of conditions were considered, with more studies focusing on mental health (n = 18, 21%) and cancer care (n = 8, 9%). The vast majority of the studies focused on process and service innovations (n = 62, 71%). Seven studies focused on technological and clinical innovations (8%), while 12 looked at both technological and service innovations (14%). Only five studies examined systems innovation (5%) and one study looked across all types of innovations (1%). PPI is more common in the earlier stages of innovation, particularly problem identification and invention, in comparison to adoption and diffusion. CONCLUSION: Healthcare innovation tends to be a lengthy process. Yet, our study highlights that PPI is more common across earlier stages of innovation and focuses mostly on service innovation. Stronger PPI in later stages could support the adoption and diffusion of innovation. PATIENT OR PUBLIC CONTRIBUTION: One of the coauthors of the paper (S. S.) is a service user with extensive experience in PPI research. S. S. supported the analysis and writing up of the paper.

Talking about frailty: The role of stigma and precarity in older peoples' constructions of frailty.

The clinical identification of frailty is increasingly thought to be important in countries with ageing populations. Understanding how older people labelled as frail make sense of this categorisation is therefore important. A number of recent studies have reported negative perceptions of the term among older people themselves. Building on this, we focus on how and why those assessed to be frail make sense of frailty as they do. We draw on 26a discourse analysis of situated interviews with 30 older people accessing emergency care in an English NHS hospital. Three interpretive repertoire pairs (Frailty is 26a bodily issue/frailty is about mind-set; Frailty is 26a negative experience/frailty is an inevitable experience; I'm not frail/I feel frail), identified across the participants' talk, are outlined and discussed in relation to discourses of the fourth age and precarity. We conclude that frailty is often seen in terms what others have referred to as 'real' old age and is linked to discourses of dependence and precarity.

Frailty as biographical disruption.

Biographical disruption positions the onset of chronic illness as a major life disruption in which changes to body, self and resources occur (Sociology of Health & Illness, 4, 1982, 167-182). The concept has been used widely in medical sociology. It has also been subject to critique and development by numerous scholars. In this paper, we build on recent developments of the concept, particularly those taking a phenomenological approach, to argue that it can also help in understanding other disruptive health-related experiences across the life course, in this case the onset of frailty. We draw on the findings of 30 situated interviews with frail older people, relating their experiences of frailty to the concept of biographical disruption. We show that frailty shares many similarities with the experience of chronic illness. Using the lens of biographical disruption to understand frailty also offers insights relevant to recent debates around both concepts, and on the continued relevance of the idea of biographical disruption given changing experiences of health and illness, including the circumstances in which biographical disruption is more and less likely to be experienced. Finally, we reflect on the potentials and limitations of applying the concept to a health-related condition that cannot be categorised as a disease.

Advancing complexity-informed health promotion: a scoping review to link health promotion and co-creation.

A complexity-informed approach has recently been proposed as a hopeful revolution for health promotion (HP), requesting appropriate ways of tackling the complexities of health, equity and well-being. In addition, co-creation has gained traction as an approach to tackle complexity. HP and co-creation are established concepts that have long been enacted in practice. Although each concept is premised on similar approaches to value-creation such as participation and collaboration, little has been done to link the two approaches. To advance complexity-informed HP, this scoping review presents findings from peer-reviewed articles, published in English, between 2009 and March 2020. Articles were identified through searches of academic databases. Twenty-seven articles met the inclusion criteria, explicitly linking HP and co-creation. Included articles were charted by descriptive information and main focus, and advanced by a thematic analysis. Four themes suggest a potential avenue for advancing complexity-informed HP: (i) dealing with complexity, (ii) value creation, (iii) the value of the values and (iv) benefits and challenges. While current links between HP and co-creation are scarce they are increasing and promising. Based on the findings from the review, propositions to advance complexity-informed HP is outlined and discussed. Overall it is argued that co-creation and HP are mutually beneficial concepts, providing a framework for participative, collaborative, context-sensitive and knowledge-based practice that reflects the complex nature of health. More research is needed to highlight potential and challenges of integrating co-creation in HP, especially related to health equity and sustainable development.

New horizons in frailty: the contingent, the existential and the clinical.

In the past decade, frailty research has focused on refinement of biomedical tools and operationalisations, potentially introducing a reductionist approach. This article suggests that a new horizon in frailty lies in a more holistic approach to health and illness in old age. This would build on approaches that view healthy ageing in terms of functionality, in the sense of intrinsic capacity in interplay with social environment, whilst also emphasising positive attributes. Within this framework, frailty is conceptualised as originating as much in the social as in the biological domain; as co-existing with positive attributes and resilience, and as situated on a continuum with health and illness. Relatedly, social science-based studies involving interviews with, and observations of, frail, older people indicate that the social and biographical context in which frailty arises might be more impactful on the subsequent frailty trajectory than the health crisis which precipitates it. For these reasons, the article suggests that interpretive methodologies, derived from the social sciences and humanities, will be of particular use to the geriatrician in understanding health, illness and frailty from the perspective of the older person. These may be included in a toolkit with the purpose of identifying how biological and social factors jointly underpin the fluctuations of frailty and in designing interventions accordingly. Such an approach will bring clinical approaches closer to the views and experiences of older people who live with frailty, as well as to the holistic traditions of geriatric medicine itself.