ArticlePublisher preview availableLiterature Review
To read the full-text of this research, you can request a copy directly from the author.

Abstract and Figures

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.
This content is subject to copyright. Terms and conditions apply.
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
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
... 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. ...
... This refers to the temporal articulation of disease experience [48][49][50][51]. Through this function, it is possible to frame the disease in the time of a person's existence [52][53][54], and to recognize turning points and differences between the time before and after the diagnosis. ...
Article
Full-text available
When people receive a diagnosis of chronic or non-communicable disease, they need to reorganize their lives to understand and accommodate the changes associated with the new health condition. This reorganization, which involves the activation of a process through which meaning is given to the illness, could be fostered by narrative methods also in the context of Primary Care. The Sense of Grip on Disease (SoGoD) model intends to focus on the role of sense-meaning-making processes in the psychological adjustment to non-communicable illness, emphasizing the patients' role in managing their own health condition. In this study, the authors propose a mixed-method research method which implies the adaptation of the narrative interview on the Sense of Grip on Disease. The interview was administered to 31 adults suffering from non-communicable diseases and has been analyzed with a theory-driven approach, which aims to explore the modalities of five narrative functions: organization of temporality, integration of illness, expression of emotions, social sharing and orientation to action. Through a Multiple Correspondence Analysis and a Cluster Analysis, the authors have identified two different 'Grip Profiles', called "Dynamic Profile" and "Compliant Profile", representative of different degrees of flexibility, integration and adjustment to disease.
... Finally, aspects of Time need to be explored to gain an understanding of the way they influence Processes. The complex relationship between time and chronic illnesses is explored by Jowsey (2016). Some participants had to negotiate identity building with a timeline consisting of before and after the diagnosis. ...
Conference Paper
This thesis presents an exploration of the experiences of adolescents with health-related needs in secondary schools, and of the parents and carers, school nurses and teachers supporting them. The health of adolescents is strongly affected by multiple factors at personal, family, school, and national levels. Safe and supportive families and schools, access to education and supportive teachers and peers are crucial to helping young people with health conditions to achieve their full potential. Improving adolescents’ daily lives with families and peers, addressing risk and protective factors in their schools, and focusing on points of intersection between their educational and healthcare providers are the structural changes needed to improve their educational and employment outcomes. For this study, an ecological model helped to understand the experience of adolescents with health-related needs and the factors that impact their support and outcomes. The research used mixed methods with a quantitative survey exploring the views of school nurses and qualitative semi-structured interviews exploring the views of adolescents, their parents and carers, school nurses and educational professionals. The interviews were analysed using thematic analysis. Findings included themes which described the views of the different participant groups from multiple angles. The central theme revolved around communication. Better and more transparent communication between all stakeholders and agencies can lead to necessary structural changes to improve the outcomes of adolescents with health-related needs. Further themes included invisible needs linked with health, training and awareness raising in schools, enhancing self-advocacy skills for adolescents, the lack of standardised support in schools as well as the need for scrutiny of the support and outcomes of this population. Recommendations for professionals and directions for future research are outlined.
... The notion of biographical time was first conceived by Corbin and Strauss (1987) in their study on 'biographical work'. They argued that chronic illness affects a person's temporal sense, disrupting 'the rhythm of the social world or the anticipation a person has of living out their days into old age along the lines of the established temporal rhythms of childhood, adolescence, adulthood, and old age' (Jowsey, 2016(Jowsey, , p. 1095. ...
Article
Full-text available
HIV is a chronic illness that does not yet have a cure but can be managed over a period (of time). HIV management is a biographical experience, structured by its temporal essence. Time is woven into the biographical structure of HIV management, meaning that an HIV diagnosis accelerates a person’s biographical awareness of temporality, which they may have previously taken for granted. This study explores the experiences of biographical time in people living with HIV. Thirty-two qualitative interviews were conducted with HIV-positive individuals, recruited via two HIV support groups in south-west Nigeria and have been living with HIV for at least two years. The transcribed interviews were analysed using thematic method of analysis. Four forms of biographical temporal orientation emerged from the participants’ experience of living with HIV in everyday life. These forms of temporal orientation—‘improvement on the past’, ‘living in the ambitious present’, ‘living in the curative future’ and ‘worried about the future’ are presented in this paper The participants compare their past and present, map out changes that has occurred in comparative terms and draw useful implications that are likely to predict or shape their future temporal outcomes. The experience of biographical temporality in HIV-positive individuals reveals a wide array of interpersonal, personal and social issues that are widely connected to the everyday management of HIV, which may be useful to global health agencies, international donor organisations, national government and counsellors and healthcare professionals in the delivery of healthcare services.
Article
Purpose Consistent with current literature, which highlights the role of narration as a key tool for exploring the processes by which people construct the meaning of their critical experiences the authors propose a theoretical and methodological model to analyse the narratives of illness and identify any innovative aspects. The generative model of mind presented refers to a semiotic, narrative and socio-constructivist perspective according to which narration constitutes one of the possible processes by which the affective and pre-verbal sense of experience is transformed into a meaning that can be symbolized and shared. Design/methodology/approach The onset of an illness represents a critical event which interrupts a person's life narrative, shattering his/her biographical continuity and undermining any assumptions of him/herself and the world. In particular, the model proposes a method of analysis, currently absent in literature, of the narrative interview Narrative Function Coding System (NFC) in order to grasp the ways by which four main narrative functions, namely psychic functions, are classified: the search for meaning, the expression of emotions, the temporal organization and the orientation to action. Findings NFC appears to be able to capture the complexity of the narrative process of construction of illness' sense-meaning making process, identifying both representative modalities of good functioning, which express a gradual process of connection with the variability of the experience, and modalities that express moments of disorganization and rigidity, which can persist throughout the time of treatment. The NFC represents not only a method for analysing illness narratives but also a method for tracking and monitoring the process of clinical intervention and change. Originality/value The sense-meaning making process perspective within the narrative socio-constructivist and semiotic framework of analysis proposed by NFC is currently absent in the literature. NFC can be a device for analysing the narrative process of sense-meaning making both for its use for clinical and preventive purposes. In addition we believe that this method, which focuses on the “form” and “way” of narratively constructing the subjective experience, rather than on the specific thematic content, can be used with all types of illness narratives, in particular the longitudinal one to explore the changes in sense-meaning making process.
Article
For the wellness industry, email communication, albeit mundane, remains an essential practice even as wellness entrepreneurs embrace newer digital technologies. Drawing on ongoing insights from a larger Australian digital ethnographic project, I explore how these ‘wellness emails’ – electronic mail communication (outside of social media) that typically circulate wellness-related content through automated email list subscriptions – promise an always-ready, abundant space for transforming bodies and optimising health. These emails teach alternative bodily temporalities, distinct from the inhospitable biomedical time of mainstream healthcare, yet also employ time-critical marketing tactics and stories to drive attention, where recipients are encouraged both to not miss out on opportunities but also to respect their own ‘divine timing’. Such temporal flexibility of wellness culture, and its promise of abundance, contributes to its global expansion, where email offers personal and marketised engagement and, critically, a potential escape from social media censorship and public health scrutiny.
Article
This paper explores the experience of ten individuals living in the UK who were in the pre-manifest stage of Huntington's disease (HD), a genetic neurodegenerative condition. Data were gathered using semi-structured interviews and analyzed using interpretative phenomenological analysis. Three themes were reported from the data: ‘feeling limited by time’, ‘the perception of stalling time’, and ‘making the most of time’, all highlighting the way in which time holds significant meaning when living in the pre-manifest stage of HD. This study has highlighted the difficulties experienced by individuals when adjusting to the pre-manifest stage of HD. Feeling able to manage their anxieties and dealing with ongoing uncertainty related to future deterioration was key to supporting their wellbeing, facilitated by factors such as positivity and hope. Individuals may benefit from counseling which supports them to develop proactive coping strategies to manage their anxieties and acceptance of an uncertain future.
Article
Full-text available
Background: Perceptual congruence has been defined as the level of agreement between partners on various aspects of their shared lives, including perceived engagement in individual and jointly performed activities. While the level of adjustment made by partners to such activities is thought to contribute to a couple’s sense of mutuality, perceptions of time use concerning activity engagement has yet to be considered. As such, this study will determine the level of perceptual congruence between partners with respect to perceived time use in their respective and shared activities. Objective: The primary objective of the IP-COUPLES study is to determine the similarities and differences between partners in terms of their perceptual congruence with respect to independent and jointly performed activities. This study will also examine the association between independent and joint activities in terms of perceptual congruence of time use and the strength of this association. Methods: This descriptive observational study includes 100 couples from Western Switzerland who are recruited using snowball sampling methods. The Life Balance Inventory (LBI), a self-report questionnaire that captures activity configuration congruence, will measure independent and joint perceptions of both time use allocated to daily activities and corresponding satisfaction. Due to COVID-19, the protocol can be administered virtually by the primary investigator. The mean scores of perceptual congruence variables will be used for analysis, namely perceived congruence of time use in terms of independent and jointly performed activities. For the first objective, an independent t test will be used for each variable to compare the mean score between activities on the LBI. For the second objective, the correlations between the mean scores for these activities will be calculated for each variable using the Pearson correlation. Results: The IP-COUPLES study protocol was developed in 2019 and 2020. Enrollment began in June 2020. Data collection will continue until October 2021 to account for time needed for recruitment due to the COVID-19 pandemic crisis. Analysis and presentation of results are expected in 2022. Conclusions: This study is exploratory, as it is the first to our knowledge to investigate how perceived time-use patterns with respect to independent or jointly performed activities are similar or different among romantic couples. By investigating the interpersonal perception of time-use patterns among couples, the IP-COUPLES study is an important first step to understanding how romantic partners’ daily activities are contributing to the level of satisfaction as a partner and as a couple and to the sense of mutuality between partners in a romantic relationship.
Article
This secondary analysis studied 50 transcripts of women who shared day-to-day experiences of lower urinary tract symptoms (LUTS) and characterized temporal (time-associated) features of living with LUTS. Findings revealed two overarching time-associated themes: The Complexity of LUTS and The Quest for Empowerment over LUTS. Findings suggest that the temporal burden of LUTS is the accumulated impact of symptoms and symptom management on women's daily lives within multiple contexts across the life course. Increasing nurses' knowledge of the temporal context of LUTS may heighten awareness and improve symptom detection and management.
Book
Full-text available
The concept of time is an important public health issue. What are the mechanisms of time? What are the characteristics of time in war and peace? What is the marriage experience? Newborn life? What are the time-related decisions? What are the health effects of the time? Is time important for family decisions? Biblical verses that deal with time are described in various situations. Therefore, this research deals with various aspects of time related on the human life. The research shows that the awareness of the time has accompanied humans during the long years of our existence.
Article
Full-text available
In Australia the policy balance has shifted away from institutional forms of health and aged care towards supporting people in their own homes. This change presupposes a significant and growing supply of informal caring labour. A large proportion of informal carers (40-60 per cent) currently combine paid employment with their caring responsibilities. Using the longitudinal Household, Income and Labour Dynamics in Australia Survey, the paper examines the effect of caring on employment, hours worked and earnings. The analysis shows that working age carers experience disadvantage. Carers are more likely than non-carers to reduce their hours of work or exit from the labour force, and earn lower levels of income. In planning for an ageing population, policies will need to address these negative effects and privatised costs of caring if the supply of informal care is to be sustained in the future.
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.
Article
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.
Article
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.
Conference Paper
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.