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Time and chronic illness: a narrative review

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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.
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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
1
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
2
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
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... Jowsey, 2016Jowsey, , pp. 1093Jowsey, -1094. Clock time is endurance. ...
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... This function appears particularly relevant with respect to the experience of living with a chronic disease, since it originates from Narrative Function Coding System the visceral processes of the body, which constitute the first and fundamental bond that guides the subsequent elaboration of the disease. Through narration, it is possible to organize the affective experience, giving voice to the body and transforming its language from inarticulate and visceral to symbolized and shareable (Greenberg and Pascual-Leone, 2001;Jowsey, 2016;Kierans and Maynooth, 2001;Rimmon-Kenan, 2002). ...
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... These authors also call for more attention to be paid in future research to patients' experiences of the new temporal structure (Pedersen & Obling, 2020). One important observation is that patients are confronted with multiple temporal structures from within and outside the hospital, which affect patient experience (Jowsey, 2016) and patient behavior (Shipp & Richardson, 2021). This paper investigates the role of time in the experience of oncology patients during the process of service delivery in a hospital. ...
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Sayendri Panchadhyayi reflects on a journey of waiting for recovery from a rare health condition, considering questions of selfhood and fractured time, provoked by the experience of malady. Timelines and the hourglass May 25, 2023 For the last few months Mira (pseudonymised) has been experiencing a numbness and tingling sensation-vernacularly referred to as "jhi jhi dhora"-while turning to the left side. Together with this spasmodic sensation, headache has been a regular companion. The pain from the headache was intermittent, a malaise. Every time pain was triggered, her daily activities came to a standstill. Every time was pain triggered, her body turned to a stationary state from a state of motion, only to be wrecked from within. Initial investigations revealed there was a cyst in her scalp and her headaches were migraines, worsening with increased levels of stress. All these symptoms were dismissed as nothing alarming. Straddling between a teaching job in a far away, remote and idyllic place and life in the city where she grew up, Mira's daily routine was hectic and itinerant, like many of her contemporaries. Commitment to her out-of-home working hours made her overlook and neglect her migraines. She deemed them simple headaches, something she was dealing with and would continue to live with. I have known Mira, a former colleague turned close-knit friend, for the last 5 years and prolonged telephone conversations have been a defining feature of the friendship. This year, our telephone conversations were initially punctuated, later interrupted, by headache, blurred vision and loss of appetite due to her declining health. With a history of thyroid issues, she conflated her headaches with indicators of worsening thyroid-related symptoms. August 24, 2023 It was June, a finding, based on an MRI that her father (her co-primary caregiver, together with her mother) had insisted upon, changed her life forever. She was diagnosed with a malignant osteosarcoma of the parietal bone, a rare bone tumour in the skull, whose long-term behaviour remains unknown (Ha et al. 1999). The preliminary recommendation of surgery, without the knowledge of this growing disease, could have jeopardised Mira's life. Recounting her experience, Mira and her parents felt neglected and betrayed by the healthcare system in her home state. This feeling of betrayal set her father off in relentless pursuit of what would be lifesaving care: translocal travel to what was perceived as the right place for such treatment-and equanimity in the face of uncertainty. Prelude These vignettes from Mira's life not only capture her tryst with an unknown, rarely-seen health condition, but poignantly track the timeline of her illness trajectory. 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. Mira was now adjusting to multiple timelines-prognosis of recovery made by professional actors; prognosis of recovery made by her parents, who were her primary caregivers and facilitated assisted daily living; and her own perception of a recovery trajectory, grounded in sentience and progress with mobility. This convergence of multiple timelines-at times competing and at others coalescing and complementing-calls for reflection on the concepts of time and temporality within the realm of medical disclosure and awareness of malady. In a close parallel with E. Mansell Pattison's (1977) conceptual framework of the chronic living-dying phase[1], wherein the dying trajectory is lingering, Mira's condition evokes the chronic resuscitation-relapse phase as she awaits treatment and searches for the missing piece of the jigsaw puzzle-what it entails to heal from osteosarcoma. Time and identity in the reconstructed, storied text of illness Mira's iterative movements-from home to private clinics, diagnostic centres for tests and hospitals for consultation and, later, an operation-outline established patterns of movement for people seeking care, creating grids and circuits that develop around these medical-clinical sites. She had no clarity on the closure of these circuits, as checkups , periodic testing and the seeking of multiple opinions from different professional actors became additional activities in the family's itinerary. Moreover, the countervailing force of Mira's intermittent pain made it appear as a reified entity (Csordas, 1996), crawling its way steadily through her world, obfuscating the distinction between her and the pain that engulfed her, disconcerting her family, planting and casting doubts on the possibility of "complete" recovery. 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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Thesis
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.
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