ArticlePublisher preview availableLiterature Review

Time and chronic illness: a narrative review

May 2016
Quality of Life Research 25(5)

Authors:

Bond University

Purpose: This narrative review is concerned with the ways in which the relationships between time and chronic illnesses have been chartered in recent literature. It aims to identify types of time (referred to here as temporal structures) most commonly reported in chronic illness literature and to assess their bearing on people's lived experiences. Methods: Literature searches of three electronic databases (Google Scholar, MEDLINE, and PubMed) were carried out in November 2014 of articles published between 1970 and 2013 using the following search terms (and derivatives): chronic illness AND time AND (patient OR carer). The review followed four procedural steps: (a) comprehensive search, (b) temporal structure appraisal, (c) synthesis of findings, and (d) critical appraisal. Results: Forty studies met the inclusion criteria and were included for review. Four types of called temporal structures had a strong presence in the literature: calendar and clocked time, biographical time, past-present-future time, and inner time and rhythms. The first three temporal structures are largely understood socially, and the fourth is predominantly understood in and through the body. Several studies reported more than one temporal structure as informing people's chronic illness experiences. A wide array of chronic illnesses were represented in these studies. Few studies reported on the experiences of people with multi-morbid chronic illnesses. Conclusion: Chronic illness induces new relationships to time. Drawing on Hyden (Sociol Health Illn 19(1):48-69, 1997), it is suggested that "narrative" storytelling-as a temporally informed analytic device-might prove effective for reconciling the tensions emergent from new and multiple relationships to time that chronic and multiple illnesses create. Opportunities exist for healthcare practitioners and health services to offer patients illness support that is cognisant of their relationships to time.

Temporal structures that feature in chronic illness experiences

…

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REVIEW

Time and chronic illness: a narrative review

Tanisha Jowsey

1,2

Accepted: 22 October 2015 / Published online: 29 October 2015

ÓSpringer International Publishing Switzerland 2015

Abstract

Purpose This narrative review is concerned with the

ways in which the relationships between time and chronic

illnesses have been chartered in recent literature. It aims to

identify types of time (referred to here as temporal struc-

tures) most commonly reported in chronic illness literature

and to assess their bearing on people’s lived experiences.

Methods Literature searches of three electronic databases

(Google Scholar, MEDLINE, and PubMed) were carried

out in November 2014 of articles published between 1970

and 2013 using the following search terms (and deriva-

tives): chronic illness AND time AND (patient OR carer).

The review followed four procedural steps: (a) compre-

hensive search, (b) temporal structure appraisal, (c) syn-

thesis of ﬁndings, and (d) critical appraisal.

Results Forty studies met the inclusion criteria and were

included for review. Four types of called temporal struc-

tures had a strong presence in the literature: calendar and

clocked time, biographical time, past–present–future time,

and inner time and rhythms. The ﬁrst three temporal

structures are largely understood socially, and the fourth is

predominantly understood in and through the body. Several

studies reported more than one temporal structure as

informing people’s chronic illness experiences. A wide

array of chronic illnesses were represented in these studies.

Few studies reported on the experiences of people with

multi-morbid chronic illnesses.

Conclusion Chronic illness induces new relationships to

time. Drawing on Hyden (Sociol Health Illn 19(1):48–69,

1997), it is suggested that ‘‘narrative’’ storytelling—as a

temporally informed analytic device—might prove effec-

tive for reconciling the tensions emergent from new and

multiple relationships to time that chronic and multiple

illnesses create. Opportunities exist for healthcare practi-

tioners and health services to offer patients illness support

that is cognisant of their relationships to time.

Keywords Narrative Chronic illness Time 

Qualitative Literature review Biographical

Introduction

Chronic illnesses are ‘‘health problems that require ongo-

ing management over a period of years or decades’’ [1].

Although chronic illnesses have different physiological,

biological, and pathological properties, they share a com-

mon thread—time. Severe chronic illnesses induce differ-

ent temporal rhythms and different relationships to time

than are experienced by the healthy person, or even the

person with acute illness. New practices may be developed

and routines established to manage chronic illness in per-

sonal and social contexts. As rhythms of bodily life alter, a

person’s expectations for the future might change, and their

relationships with other people (who have their own tem-

poral rhythms) might also adjust. Meanings attributed to

past and present experiences and practices, as well as

future plans and imaginings, acquire new signiﬁcance with

chronic illness. As the time spent on health-related prac-

tices increases, meaning attributed to time expenditure may

also take on new valence.

&Tanisha Jowsey

t.jowsey@auckland.ac.nz

Centre for Medical and Health Sciences Education, Building

599, Level 12, Room 12.025, Auckland City Hospital,

University of Auckland, 2 Park Road, Grafton,

Auckland 1023, New Zealand

Australian Primary Health Care Research Institute, The

Australian National University, Canberra, Australia

123

Qual Life Res (2016) 25:1093–1102

DOI 10.1007/s11136-015-1169-2

Content courtesy of Springer Nature, terms of use apply. Rights reserved.

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Misdiagnosis lengthens suffering, making it appear to Mira as a never-ending and inescapable loop. This protracted timeline slowly dunks her into a cesspool of anxiety and trauma. Revisiting trauma whilst remembering how she could have died, flickering hope and mustering residual vim to go on, albeit "missing out" on going outside, carrying out her daily tasks without assistance and being in control of her life. Osteosarcoma smothered her being. The ordeal of living with a chronic condition can mean vitality is eclipsed, with the patient not fully knowing the acuteness of the disease, malaise sprawling from the source to the other parts of the body and the potential for disfigurement. 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She felt she was not the same person she used to be; animosity towards people stemmed from a lukewarm to cold response from her wider family network, chronicling the revelation of osteosarcoma and then encountering their apathy when visiting her in the post-operative phase. Through this, we see time as a paradigm for her to understand her illness and illness as a paradigm to understand time. Illness-a temporal discontinuity-blurs the difference between before and after, cause and effect (Reissman, 2015). A temporally informed position in understanding illness allows for reconciling the new and multiple relationships to time (Jowsey, 2015). For those with a chronic condition and swerving in uncertainty, temporal disruption often culminates in a meltdown-this was certainly Mira's experience. Her dilemma: scepticism and distrust were conceived out of a series of bad experiences. Navigating and negotiating multiple spaces through her healthcare journey have disrupted time and space for Mira. Chronicling her illness aetiology, Mira essentialised temporality or time in healthcare. Analysis of her narrative allows for a teleological understanding of the temporal aspect immanent to illness (Ezzy, 2000). This temporal dimension to healing, makeshift wellness or prognosis of relapse undergirds the entwined time, health and identity. Temporal concerns are consequential to understanding the tonality and texture of Mira's encounter with osteosarcoma, words indelible in the memory archive, and her pausing to sift through salient vignettes. A personal narrative of illness progresses like a plot, revolving through a temporal sequence with consequential linking of events; a form of time travel, punctuated with flashbacks and flashforwards, establishing narrative as profoundly linked to time (Charmaz, 1999; Reissman, 2015). Mira's journey draws attention to the socially unmoored, affective experience of time, the unsettled temporality of care and the entangled bio-politics of subjects responsible for self-care (Cook and Trundle, 2020). Albeit the malady threatened to debase her existence, this narrative became the sum of her efforts to reclaim control and shape her future. This was also probably the reason why Mira kept on getting back to me every month, despite interruptions from coughing and exhaustion. She was all too aware of the multifaceted impact of osteosarcoma and wanted to share her story of its consequences for personhood, and of the medical triumphs and failures she experienced, with a wider pool of people. Recovering is a complex process wherein acknowledging competing desires and temporalities is essential to engage and empathise with the recovering body and identity. This is what Mira sought to do through our conversations. Epilogue Dealing with a malady disarrays the essence of time, space, body and identity. Right from the experience of malaise to the diagnosis, the individual begins the struggle with time as waiting for recovery, translated in the local cosmos as "bhalo hoye jaowa" (getting well), "thik hoye jaowa" (feeling better) and "sere otha" (recuperation). This waiting is often transformed into chronic waiting, as the doubt of complete recovery and its vestiges continue to lurk, portending to resurface at any time. As these permeate into the identity, time appears as ambiguous and fosters an ambivalent association with it. Since the inception of signs and indicators of this malady, time appeared as stretched and protracted for Mira, meandering towards an unknown, alien and uncharted territory. The temporal ruptures in quality healthcare interventions inject long-term fear, distrust and trauma, furthering the gap between the people seeking care and the actors and institutions responsible for care. Perhaps sharing stories, such as Mira's, could be a profound way of looking at identity, personhood, care and embodiment while waiting for recovery. Notes [1] E. Mansell Pattison (1977) proposed the living-dying interval theory to understand the process of the dying trajectory, from the "crisis of the knowledge of death" to the "point of death". He identified three such clinical phases-the acute crisis phase, the chronic living-dying phase and the terminal phase. In all of these phases, a person's adaptation to their knowledge of death, and their dying trajectory, remained Pattison's interest. In the case of Mira, the application of Pattison's chronic resuscitation-relapse phase refers to the continuous struggle between the anticipation of feeling better and the decline in her general wellbeing, together with its impact on her recovery trajectory. About the author Sayendri Panchadhyayi is a member of visiting faculty at the National Law School of India University (NLSIU), Bangalore, teaching a self-designed course on "Ageing, Lifecourse and Death Studies", and a research fellow at IIM Calcutta, working on "Healthcare Inequalities in India: Mapping actors, logics and care practices". As an interdisciplinary sociologist, her research dwells in the areas of medical anthropology, cultural gerontology, social geography, sociology of care, thanatopolitics and policy research.

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WESTERN J NURS RES

Background People with chronic illnesses may struggle to adapt psychologically to the illness experience and have feelings of identity loss, self-diminishment, and biographical disruption. This may limit people’s ability to engage in optimal self-management. Systemic sclerosis is a debilitating, stigmatizing, and life-limiting progressive chronic illness with significant disfiguring effects. Little is known about the identity management process in people with disfiguring and debilitating conditions such as systemic sclerosis. Purpose The purpose of this study was to generate a grounded theory explicating the process of maintaining a sense of self in people living with systemic sclerosis. Methods Fifteen women with systemic sclerosis were recruited to ensure representation of a range of illness duration and progression. Semi-structured interviews were conducted, transcribed, and analyzed using open, selective, and theoretical coding. Results A basic social process of “maintaining self” was generated from the data that explained the women’s experience of living with systemic sclerosis and how they tried to hold on to their identity. Three core categories were identified. Adapting to changes are the behaviors that participants struggled through to carry on with their everyday lives. Dismantling of self was a distressing internal process where participants lost their sense of self and purpose. Restoring self was a transformative process that allowed participants to rewrite and rebuild their biographies. Conclusions Findings suggest that the management of identity was important for understanding how people adapt to life with systemic sclerosis. This study can help nurses better understand how to support patients holistically with the management of systemic sclerosis.

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Jiří Šubrt

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Mar 2002

Maurice Merleau-Ponty

Uncovering the event structure of narrative

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Jan 2003

W. Labov

Speech actions and reactions in personal narrative

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W. Labov

Chronic illness time

Thesis

Aug 2013

Tanisha Jowsey

As the term ‘chronic’ suggests, the chronically ill body is one that reorients itself to the ways in which time is perceived, experienced and used, in a multiply of ways. New practices are developed and routines are established to manage chronic illness in personal and social contexts. As rhythms of bodily life change one’s expectations for the future might change, and their relations with other people (who have their own temporal rhythms) might also change. Meanings attributed to past and present experiences and practices, as well as future plans and imaginings, acquire new significance with chronic illness. Through public health and anthropological lenses this thesis investigates some of the intersections between chronic illness and time. In his tone-setting analysis of the ways in which chronic illness influences relationships with and to time, Bury (1982) argued that chronic illness invariably creates a ‘biographical disruption’ for the individual with chronic illness. This thesis provides empirical evidence collected in Australia, including self-reported calendar and clock/ed time spent on managing illness, much of which broadly supports Bury’s analysis. However, this thesis also questions the veracity of Bury’s sure and certain claim; while acknowledging that chronic illness can be and often is disrupting of the biography, I suggest that there is more variety in experiences of chronic illness than Bury’s theory allows. For instance, people may feel their biographies to be initially disrupted, but the profundity of disruption that Bury attends to may absent itself after a time, as the management of chronic illness fades into the background of habitual life. So too, can chronic illness create cycles of disruption even as the illness moves between stable and unstable phases. Alternatively, people may find that the onset of chronic illness was something they had expected, and experience the illness not so much as disruption but as confirmation to their biography. This thesis identifies several ways in which Bury’s thesis may be nuanced and challenged. Using data gathered over a number of different fields, and covering a wide range of illnesses, I show in this thesis that factors influencing biographical disruption, including the type and severity of illness; the stage of life that the individual is in when they become ill; their previous relationships to their body and to time; the self-management behaviour in which they engage; the amount of time they spend on health practices; and the sense ill persons have of their own agency, impact on whether and how much of a biographical disruption chronic illness is to the person. As I will demonstrate throughout this thesis, the importance of time in the experience of chronic illness is not sufficiently recognised by the primary and secondary health care sectors. It is very common, for instance, for a chronically ill person to access multiple care providers – each of whom provide management of illness advice (and possibly medication prescriptions) into a kind of time vacuum – without reference to the ways in which the person’s time is already accounted for – including time spent attending to the advice, management and medication regimes of other health care providers. It is very often the case that a time burden of chronic illness arises from information provided to the patient whose time is assumed to be wholly available. The development of a care plan, which I propose at the close of this thesis, provides a device for enabling those with chronic illness to anticipate and plan for a future where illness will move them into different phases of experience. It also enables aligning of otherwise singularly administered regimes in and through the defining feature of chronic illness – time.

Perceptions of time and identity: informal family carers of people with chronic illness

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Sep 2011

Tanisha Jowsey

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Apr 2013

First published in 1945, Maurice Merleau-Ponty’s monumental Phénoménologie de la perception signalled the arrival of a major new philosophical and intellectual voice in post-war Europe. Breaking with the prevailing picture of existentialism and phenomenology at the time, it has become one of the landmark works of twentieth-century thought. This new translation, the first for over fifty years, makes this classic work of philosophy available to a new generation of readers.

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Feb 2012

This paper explores how the structuring of places and time infl uence Aboriginal and Torres Strait Islander patient and carer experiences of health services. Face-to-face in-depth interviews were conducted with urban Aboriginal and Torres Strait Islander people with diabetes, chronic heart failure or chronic obstructive pulmonary disease as well as family carers (N = 19). Content analysis was undertaken. Participants report that each element of the time spent in Aboriginal Medical Services is seen as more valuable and worthwhile than in mainstream health services, from social and health sharing experiences in the waiting room to health care in clinical places; and that users feel they can rely on sufficient time and respectful care in their clinical consultation. Purposeful design of both physical and temporal aspects of health services is called for. We suggest re-introducing opportunities for spatiotemporal design in health care that have been limited by the segmented 'person as illness' design features of Australia's current mainstream health system.

Illness and Narrative

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Jan 1997

Lars Christer Hyden

The article gives a review of the last ten years' of research on illness narratives, and organises this research around certain central themes. Four aspects of illness narratives are discussed: 1. a proposed typology giving three different kinds of illness narratives - illness as narrative, narrative about illness, and narrative as illness; 2. considerations of what can be accomplished with the help of illness narratives; 3. problems connected with how illness narratives are organised; and 4. the social context of telling and its influence on the narrative. It is argued that as social scientists we can use illness narratives as a means of studying not only the world of biomedical reality, but also the illness experience and its social and cultural underpinnings.

Time and chronic illness: a narrative review

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