Worry and time: the unseen costs of informal care

Abstract

Objectives

The objective of this study is to examine the experiences of informal carers in terms of how their time spent caring is related to worry. Is worry about a care recipient a care practice, and if so, to what extent it can be understood temporally?

Methods

Classical phenomenology underpinned this study. Three qualitative studies of people living with chronic illness in Australia were conducted between 2009 and 2013. Semi-structured interviews were conducted. Interviews were audio recorded and transcribed verbatim. Phenomenological thematic analysis of the data was undertaken.

Results

Twenty-five informal carers participated. The findings pivot around three interconnected themes: time, worry and cost. Worry was identified as a temporally bound unseen cost to carers that informs carer identity irrespective of culture, ethnicity, or social status.

Discussion

Worry is a practice that most carers report engaging in and it is one that comes with a temporal cost—it keeps people busy looking after the needs of others during the day and it keeps some people awake when they would rather be sleeping. Worry takes time and effort, it informs people’s construction of their own sense of self, motivates acts of care, and informs carers’ imaginings of what their future and that of their loved one(s) may entail.

Keywords

Worry anxiety Australia informal carer phenomenology

Introduction

The notion that time¹ can be commodified and viewed as an opportunity cost has been well recognized since Benjamin Franklin’s infamous assertion that “time is money.” Recently, health economists and researchers have drawn attention to the “unseen costs” of informal care; to individuals who take on informal caring roles, and to society more broadly where impacts of informal care can be felt in reduced labor market capacity and other societal domains.^2–7 The “cost” of informal care to carers can be far reaching; decreased carer wellbeing and ‘compassion fatigue’ are widely recognized.^8–11 Informal carers are usually parents, spouses, or children of people with illness or disability, and this paper is concerned specifically with informal carers of people with severe chronic illness (“carers” hereafter).

In 1988, Kleinman noted that “chronic illness almost always holds consequences for the family and other close personal relationships, and sometimes those consequences are very serious indeed. The disease may be localized in the tissues of a single individual; the illness incorporates his social circle.”¹² Despite the western obsession with individualism, autonomy and independence, the reality of chronic illness and its management is one of the social obligations and interactive necessities; it involves ethics, morals, and actions on behalf of others. As illness progresses, a person’s reliance on others for assistance tends to increase. Drawing on Schutz,¹³ Geertz writes that during this time, carers and care recipients “are “involved in one another’s biography” at least minimally; they “grow older together” at least momentarily.”¹⁴ This “being involved in one another’s biography” includes the development of an intimate relationship between carer and recipient and it also informs the way that carers shape their sense of identity over time. Due to the temporal ongoing nature of chronic illnesses—indicated in the term “chronic”—it is not uncommon for carers to spend many years looking after a care recipient; they may spend many waking hours undertaking care such as navigating health services, driving care recipients to appointments, and preparing special foods for care recipients. Practices of care are not, however, limited to waking hours. Carers may spend time previously put aside for rest looking after others and may feel that they maintain care responsibilities even while sleeping.

What are practices of care and how much time do carers spend on them? Research by Yen et al.^15–17 has measured some elements of the time that carers of people with chronic illness in Australia spend on health-related practices. They follow Corbin and Strauss,¹⁸ who describe the “work” of chronic illness as entailing both practices and ideas; physical as well as biographical. In their 2013 article concerning the time use of people with chronic obstructive pulmonary disease (COPD), Jowsey et al. suggest that time spent on health-related practices leads to what Bury¹⁹ has termed ‘biographical disruption’—the disruption of a person’s imaginings about the way their future will unfurl. Jowsey et al. suggest that consideration of these two temporal dimensions (amount of time and biographical time) can help us to understand time’s fundamental place within the social reality of carers.¹⁷ Meanings attributed to past and present experiences and practices, as well as future plans and imaginings, acquire new significance with chronic illness for both carers and people with illness.²¹ Both time and worry are clearly evident in illness-related biographical disruptions.

Can worry about a care recipient be interpreted as a care practice, and if so, to what extent can it be understood temporally? Our response to this question is informed by experiences reported by carers in three studies. Methods and findings from each dataset have been reported previously.^22,40–41 Here we present triangulated findings concerning worry as an expensive and temporal cost of care; indicative of the shared circumstances of many people living with chronic illness. While each dataset included both people with chronic illness and carers, our focus in this paper is the experience of carers.

Methods

Ethics approval

Study approval was obtained from the Australian National University Human Research Ethics Committee for all three studies (protocol 2007/34, 2011/656, 6/06.434).

The three datasets are referred to as

Qual 1: main study

Qual 2: Aboriginal and Torres Strait Islander

Qual 3: fieldwork

Data were collected in Australia between 2008 and 2012.

Data collection

Qual 1: Main study

This qualitative study comprised 66 semi-structured interviews with people who had at least one of three chronic illnesses: COPD, chronic heart failure, and/or type 2 diabetes mellitus; and/or their informal carers. Fourteen informal carers were interviewed during 2008. Using purposive sampling, participants were selected based on residence, age (65 years and older), and illness type. Participants lived in the Australian Capital Territory (ACT) and Western Sydney in New South Wales, Australia. People with cognitive impairment were not included. People whose spoken language at home was not English were offered an interpreter for the interview. Participants were asked to describe their experiences of chronic illness and their interactions with health care services. The study methods are described in full elsewhere.²²

Qual 2: Aboriginal and Torres Strait Islander

Qual 1 did not reach saturation in findings for Aboriginal and Torres Strait Islander people (Australia’s first peoples). Therefore, during 2009, further research was undertaken using the same inclusion and exclusion criteria as Qual 1 (although the age inclusion was lowered to 30 years and older to account for more rapid progression of chronic disease and resulting shorter life expectancy). The dataset was closed with 19 participants, three of whom identified as informal carers. The areas where the data collection methods differed from Qual 1 include engagement of Aboriginal and Torres Strait Islander communities through the local Aboriginal Medical Services, engagement of researchers with broad experience in indigenous-specific research, the inclusion of culturally safe questions and the use of culturally safe spaces.

Qual 3: Fieldwork

A small confirmatory study utilized ethnographic methods to explore the associations between people’s experience of chronic illness and their relationships to time. Inclusion criteria included having chronic illness and/or caring for someone with chronic illness, and living in the ACT. In total, 25 people were interviewed (semi-structured). Participant observation was undertaken over several months with the Canberra Lung Life Support Group (typically attended by about 20 people at each monthly meeting). Eight informal carers were interviewed.

Carer participants in each study were interviewed using a semi-structured interview guide, typically for between 45 and 60 min. The guides used for each study differed slightly, but all were primarily concerned with understanding the lived experiences of carers. Interviews were audio recorded and later transcribed verbatim. Detailed notes were taken during each interview. Transcripts were imported into QSR Nvivo Qualitative software²³ for data management and phenomenological data analysis.

Data analysis

Phenomenology provides a philosophical paradigm for undertaking research and interpreting research data. This study is underpinned by the writings of Heidegger,²⁴ whose emphasis on words and communication leads us to an interpretive model for understanding human experience; and by Merleau-Ponty,²⁵ whose emphasis on bodily experience builds on Heidegger’s observations and offers a body-centric phenomenological perspective. Drawing on these two philosophers, this study takes a classical phenomenological approach, which allows for close attention to the lived experiences of carers, described by carers themselves. The analysis began with a close reading and re-reading of the transcripts and notes, during which it became apparent that time, worry, and cost feature strongly in carer experiences. While maintaining a phenomenological approach, we followed Aronson²⁶ and Savin-Baden and Howell Major²⁷ in the next steps of the analysis, which were to identify how participants recounted associations between these central themes (i.e., to identify patterns in the ideas and experiences). We then made connections between the patterns to get an overall sense of the key messages emergent from the 25 carers’ experiences.

At this point, we checked to see how these messages related to existing relevant literature. Triangulation uses different sources of data to draw conclusions. When different datasets point to the same findings, they contribute to the overall validity of the conclusions.²⁸ We used the data from three studies as well as current relevant literature to identify the findings as they are reported here.

Findings

Across the three studies a total of 25 carers were interviewed. Twenty-two (88%) carers were female. Three carers (12%) identified as Aboriginal and/or Torres Strait Islander. Seven carers (28%) were immigrants and of them five spoke a language other than English at home. Three carers were interviewed with the assistance of a professional interpreter. Thirteen carers (52%) were aged 64 years or more. Twenty-two carers (88%) were married or living with their partner. Six (24%) carers were caring for a parent; the other nineteen carers (76%) were caring for their spouse/partner. Sixteen carers (64%) cared for someone with more than one chronic illness. Fourteen carers (56%) reported experiencing financial difficulty. Two carers (8%) reported their experiences of long-term caring for their husband who had died prior to their participation in the study (one 10 months, the other 24 months earlier).

Three key interconnected themes were salient across the data: time, costs, and worry. Labov,^29–30 Riessman,³¹ and Ricoeur³² have identified that past–present–future time features strongly in structuring narratives and this was certainly evident in our participant narratives concerning practices of care. In addition to past–present–future temporal orientations, participants often referenced calendar and clocked time when describing when events had occurred and how long events had taken. The value attributed to such time was most often couched in monetary or commodity terms—time was perceived of as a limited resource that carers spent on care recipients. Additional temporal overtones of prioritization and timeliness featured in participant narratives.

Time pressure and time scarcity—the feeling that there is insufficient time to undertake one’s priorities and tasks, which increases one’s sense of stress or anxiety—was created by the caring role and this contributed to participant-reported burnout and compassion fatigue. However, time was not the only contributor to the “cost” of care in carer experiences. Carers consistently reported that worry about their care recipient and about the future were an integral component of their overall time spent caring. These connections between time, costs and worry are explored below.

The cost of worry time

Worry has been defined as a process whereby a person may “feel or be caused to feel anxious or troubled about actual or potential problems.”³³ With a focus on parents as carers, Van Manen explores the notion of “care-as-worry” in terms of “moral-emotional relation of responsibility.”³⁴ Van Manen notes that the English-Dutch translational dictionary both “worry” and “care” are translated as zorg or zorgen; implying that the two are inextricably linked. What is this link? He writes, “Worry—rather than duty or obligation—keeps us in touch with the one for whom we care.”³⁴ Our findings suggest, however, that this sense of concern, this feeling of anxiety or troubles about a care recipient may exist in partnership with an equally strong sense of duty or obligation that is established in close and familial relationships.

Worry was described by many carers as a key element in their chronic illness experiences. They said,

“At this stage, I was worried because you never know [what is making him sick]. … So he was very bad, very bad, as I said, it was very bad, for one year, I was very worried” (Alice, Qual 1).

“Ovarian cancer, okay, which is in remission in the moment and last time she had scans, the tumour was very small. Her specialist was rapt. But now, it’s the lungs, it’s the asthma and things like that, but that concerns me, that worries me…especially here in Canberra…winter” (Jan, Qual 1).

“[I’m] just worrying that if she’s going to go to needles, how she’s going to be able to manage that (Mia, Qual 1).

“I was always worried about dying. Too many antibiotics. Kidney problems. So I got really anxious. I didn’t know what was wrong with me and I couldn’t stop myself from worrying and I thought ‘I just can’t cope’” (Pam, Qual 3).

In each case, worry was described either relation to past–present–future temporal orientations or as an ever-present reality. That is, while some reported that their sense of worry was heightened at specific points in time—for example, during the time of diagnosis, during exacerbation of their care recipient’s illness—for others, the sense of worry was ongoing. It disrupted their sleeping patterns. Participants reported they slept lightly, so that they could be ready to attend to immediate and emergency needs. They would sleep in a different room, or try to catch a quick sleep in the afternoon to make up for nighttime sleep disruption. They described lying in bed worrying about how a family holiday away could be possible in the context of treatment needs.

“Everything becomes more difficult. We’re going away on holiday in a few weeks’ time and I’m always a little bit anxious since we’re …[not] within easy reach of a hospital…there’s always that concern. That’s one of the things that always worries me” (Regina (Qual 1).

People living with chronic illness observed that worry had a physical effect on their health, as Bill (Qual 3) described; “worry makes your BGLs [blood glucose levels] go up.” He strategically walked his dog in the park and used mindfulness to reduce the amount of time he spent worrying, in turn reducing the amount of insulin he needed. Carers reported experiencing ongoing, even circling, thoughts of concern about their care recipient’s wellbeing. They described strategies they had used specifically to minimize or address their concerns. Vanessa (Qual 2) worried about her father’s nutrition and reported that his fridge was always either empty or filled with expired foods. To minimize her anxiety, she periodically restocked his fridge with fresh nutritious foods that were easy for him to prepare. In this way, worry can be seen as a prompt for care, inextricably linked to the feeling and actions of care-giving and chronic illness.

In her study of people living with chronic illness, Jowsey³⁵ describes costs of informal caring practices as often including time spent worrying. We expand on this and propose to coin the term ‘worry time’ as a specific temporal structure that informs people’s experience. Carers in this study spent time worrying about their care recipient and their own future with or without them. This time spent worrying, we suggest, is linked both to the social and to lived contextual experiences born of chronic illness as well as previous intimacy or relationship quality between carer and care recipient. The concept of worry time incorporates Van Manen’s idea of care-as-worry; the sense of moral duty and obligations that tend to emerge in close and familial relationships, and the temporal components associated practices of care.³⁴

Time as a commodity and the cost of care

Carers who were in the workforce spoke of the amount of time they spent on caring activities in relation to the time lost in paid working activities, and by so doing referenced time as a commodity. Lola (Qual 3), a 40-year-old massage therapist and carer of her brother Luke who had COPD, checked her phone for missed calls from him between massage appointments and returned calls before her next appointment. She spent the few minutes between clients calling Luke’s health care practitioners to arrange care and then rescheduled her own working appointments (or cancelled them) to accommodate Luke’s care needs. Lola routinely avoided making massage bookings on Thursdays when Luke attended rehabilitation clinics and had clinical appointments (that she helped him attend). These practices demonstrate Lola’s concern and worry about her brother’s health. She described a constant level of worry about her brother and about the largely unpredictable nature of his care needs.

“Apparently he could last up to two years but I don’t think he’ll last that long. But I just want to speak to someone, get some advice … So I don’t have to rely on someone else to recognize the signs, so I’ll know when his time comes what to do.”

Because of the severe nature of Luke’s illness, he was admitted to hospital between four and eight times each month, often staying in for several days and he needed Lola’s attention during these times. Lola described changes to her preferred routines and earning capacities resulting from his care needs; indicating that Luke’s care came at a real monetary cost to Lola. Luke had been in hospital for four nights consecutively when Lola told the researcher “All this running around for Luke, back and forth from the hospital, the whole week is gone. I haven’t seen my husband all week, let alone any clients.” Evidently, the “costs” of care went beyond money to informing Lola’s relationships with other important people in her life by reducing the free time she had left to spend with them. Other carers whose care recipients had illnesses that resulted periodically in their hospitalization would make similar comments that during such times carers were unable to work usual hours; that the time spent caring was intense, exhausting and often distressing; and that even when undertaking non-care-related tasks carers were worried about their care recipient.

For carers receiving a government carer allowance to recompense their caring role, the amount they received was a pittance compared with what they could or had previously earned in paid work. “I don’t spend it [the stipend] all at once,” one carer (Madaleine Qual 1) said sarcastically. Carers who reported being paid an allowance commented that it was a dismal amount of money considering the amount of time and effort, and level of specialized knowledge that their caring roles required. Several factors informed the decision to seek the allowance, including but not limited to, the type of familial relationship that existed between carer and care recipient (for example: husband/wife, parent/child, sibling, friend, neighbor), the carer’s self-identification as a carer, the health status and health needs of the care recipient, the perception by the carer and/or care recipient that time and resources associated with care practices would be ongoing or would increase, knowledge of the allowance’s existence and the carer’s potential eligibility.

“Spending” time was a common reference by carers across all three datasets, further alluding to its monetary value. Carers “spent time” in care activities. Sometimes this was time, they spent apart from the care recipient, such as in the case of arranging transport for their care recipient, or shopping on the behalf of their care recipient. Regina (Qual 1), a 64-year-old woman preparing special foods for her husband with chronic heart failure (CHF) said: “I must have spent an hour in every aisle … reading the labels for potassium and sodium.” This temporally demanding practice was informed by her concern for her husband’s health, and her worry about potential ramifications of his consuming foods that were high in salt. But more often than not, participants reported that this time was spent with the care recipient, and that this shared time—what Fabian has called “coeval time”³⁶ and Schutz has termed “a shared community of time”¹³—could amount to “a full time job” ((Madaliene Qual 1). Mia (Qual 1), a woman in her fifties who said she felt fatigued and exhausted from the caring role said, “I haven’t wanted to make any extra appointments … there’s been too many lately”. Others who had large time-sharing loads reported feeling “tired” (Mary Qual 2) or “constantly exhausted” (Rebekah Qual 3).

Aboriginal and Torres Strait Islander participants and migrant participants reported that the high temporal demands of sharing time, coupled with changes to their previous relationship because of the illness and caring needs, created tensions. Female spousal/partner carers most commonly reported experiencing an extra layer of worry concerning their relationship with their husbands/partners. Francoise (Qual 1) said she worried constantly about her husband’s eating practices and the effect that they had on his blood-sugar levels, but she also felt that her “policing” and badgering him put strain on their relationship. She said she spent a lot of time worrying about his health, their relationship, and what their future would entail.

To minimize temporal costs, some carers created informal “shared care” arrangements with other family members, whereby they would each take on care responsibility for specific days of the week or for one week at a time. Jim (Qual 3) said “‘I share the load with my brother, we take turns flying [to another Australian city] to look after her.” Other carers would engage formal respite services; although this was infrequently reported and respite service use was often described as “too hard” to access (Jan Qual 1), “too difficult” (Mia Qual 1), or as a “last resort” (Mary Qual 2; Jim Qual 3).

Carers reported prioritizing the needs of care recipients above their own needs (reported elsewhere in terms of carer self-neglect).² This practice was most commonly reported by Aboriginal and Torres Strait Islander participants and by participants who cared for their ill husbands. Doreen (Qual 3) was 75 years old and in pain due to multiple sclerosis. Doreen’s husband Pete had COPD and required home supplementary oxygen. Both Doreen and Pete had limited mobility. Doreen said she always prioritized her husband’s needs and preferences before her own; she would prepare his meal first; if they had to drive somewhere she would drop him at the door before parking the car. Prioritization concerns timeliness. Carers, particularly those caring for people with diabetes, described their efficacy at providing care at the appropriate times, such as providing meals at exact intervals after insulin had been administered. Carers of people who required home supplementary oxygen described always “living on edge” because they had to “always be ready” (Madeleine Qual 1) to assist in replacing an oxygen cylinder—failure to act in a timely fashion could have dire consequences for the care recipient. In such cases, where unpredictable urgency in care needs could arise carer worry was most frequently reported.

Uncertain futures, worry, and identity

People were concerned with what chronic illness meant in terms of their identity and life trajectory. Carers attempted to balance the illness-management needs of their care recipients with their own needs and in the context of uncertain futures; imagining one’s future was laced with worry, concern and anxiety stemming from the unpredictable and severe nature of chronic illness. Carers were deeply entrenched in what Bury¹⁹ and also Corbin and Strauss¹⁸ have described as the “biographical work” of chronic illness. For many, care for another person became a large facet of their identity, one that could be difficult to let go of even when caring duties ceased. Rose’s (Qual 3) husband had passed away 2 years ago when Rose was interviewed. Rose remained an active member of the illness support group that she and her husband had initiated several years prior to his death. Similarly, another carer participant whose spouse had died maintained her role in support groups, and both shifted their care practices to the benefit of other care recipients, and continued—for years—to shape their identity around chronic illness care.

Here the notion of cosmopolitanism is evoked in two ways. Worry can be interpreted as an example of cosmopolitanism in its shared, universally expected moral position or stance, largely hidden, and with undefined boundaries and standards. There is no yardstick—discursive or otherwise—to measure what would constitute “normal” or reasonable in terms of worry time. Second, for these participants, practices of care had begun in response to the needs of someone with whom they had a relationship; however, they chose to continue practicing care with different people. Was this informed by their sense of moral duty to care or by their comfort with the illness or group, regardless of the specific care recipient? Or had they developed a shared ethic, interaction and familiarity with these others to such an extent that they now had a vested interest in them? For most, a shared sense of community with group members and group activities was a strong driver behind their decision to continue engaging in care-related practices. For other carer participants, the time they spent on practices of care ceased upon the death of care recipients and they suddenly found themselves with a wealth of “free” time, of “time to themselves”, and of opportunities to imagine their new future where the worry associated with chronic illness might not feature.

Discussion

Over the course of days and even decades, carers spend uncounted hours looking after the needs of others. Much of this time is shared with care recipients and constitutive of carer identities and ontological world-making; so much that when care recipients die carers continue practices of care with others.

This contribution to personhood might be interpreted as a counter-balance to the “costs” of care. Carers may gain a deeper intimacy and closeness in a relationship with their care recipient that would not have emerged absent their caring role, as Schutz alerts us to with his notion that people are “sharing moments in time” and “growing old together.”¹³ Our analysis indicates that care does not consist only of positive feelings such as love or nurture; caring involves negative feelings too, and worry is one of the most common.

These temporal and anxiety-ridden experiences are widely shared; most of the carers we interviewed reported that worry was a significant element in their care-giving experiences. This suggests that, for carers and those they care for, worry could be viewed within the rubric of cosmopolitanism as a pervasive but ill-defined and measured. However, the amount of “worry-time” a carer spends, and the level of concern they experience may be informed by the extent supports and services available. Worry is informed by the carer’s familiarity and relationship with the care recipient, reflecting the carer’s vested interest in the care recipient’s health (above unfamiliar others, or even themselves, who may have similar or even worse health).^20,37,38

Is worry intrinsic to a practice of care? The frequency of accounts of worry in our participant narratives suggests that worry is discursively located within practices of care; indeed, that it may not actually count as “care” unless the carer has at least some level of worry for the care recipient. But is worry in and of itself a practice of care? Oxford dictionaries define care as “the provision of what is necessary for the health, welfare, maintenance, and protection of someone or something.” Although worry may not “provide” what is necessary it can prompt or motivate people to provide what is necessary. While carer concern for the wellbeing of their care recipient may contribute to their own stress and burden, it can also function as a motivational mechanism to provide care for others. It may be that worry, like stress, occurs on a continuum; one end of which is characterized by alertness and preparedness to plan and act, while the other end is characterized by ruminative helplessness.

Measuring the amount of time that the mind dwells on one thing is a near-impossible task because we flit between memories, imaginings of and concerns for the future, and even sensory observations. While we might yet be unable to accurately measure the time a person spends worrying about someone else, we can identify signs of prolonged or enduring worry time; such as changes to sleeping patterns, anxiety and depression, fatigue and exhaustion, and so forth. Robbins and Kermayer³⁹ have identified that “enduring illness worry”—anxiety regarding a person’s chronic illness and its management—can be experienced by both patients and carers; and that it has implications for their health. Their findings are supported by Pinquart and Sörensen,⁹ whose meta-analysis demonstrates consistent significant differences in psychosocial and physical health between carers and non-carers, with carers facing higher rates of depression. Our findings point in the same direction, suggesting a need for closer health and social systems attention to the time spent worrying as a cost of care.

Implications for health service delivery

Awareness, alertness, anticipation, and anxiety all come into play as components of worrying that add time and effort to the work of carers. What would make caring less worrying? The activities that might best help carers might be those that integrate planning, action and provision of services; that decrease uncertainty about what will happen, and provide a secure care pathway with a reliable and responsive “emergency cord.” Information and compassionate support that allows the carer and the person they care for to plan for events in the future (such as with a Chronic Illness Management Plan), including death (with an Advance Care Plan), will not stop the worrying, but may well turn worrying from relentless and circular anxiety to the anticipation and planned management of real needs for both the carer and the person they care for. Carer’s worry could be reframed and harnessed as a point of entry for the tailoring of services and supports.

Acting on these elements does have policy implications—the pricing and payment of interventions by medical and other health staff is a key determinant in which activities will be provided. In a system that is increasingly cost-focused, the atomization of care is more likely. The signal failure of governments and professionals to work out how to provide integrated care leads those in great need—the aged, the disabled, the sick, and their caregivers—to having to waste time, among other resources, in trying to make sense of and manage complex care needs over which they have little control, but plenty of worry.

Conclusion

We find that worry is a practice that most carers report, one that comes with a temporal cost—it keeps people busy looking after the needs of others during the day and it keeps some people awake when they would rather be sleeping. Worry takes time and effort. It informs people’s construction of their own sense of self, motivates acts of care, and informs carers’ imaginings of what their future and the future of their loved one(s) may entail. The impacts of worry as a practice of care are keenly experienced as a significant ‘unseen cost.’

Limitations

The data were collected between 2008 and 2012, but we see no indication that the conclusions drawn are invalidated by the time that has passed.

Footnotes

Acknowledgements

The authors would like to acknowledge and thank the team members of the Serious and Continuing Illness Policy and Practice Study (SCIPPS) who provided data for the first two studies (Main and Indigenous). The authors would also like to acknowledge and thank Dr Simone Dennis, who supervised T. J. during the data collection and primary analysis of the Fieldwork study. All authors were supported by the Australian Primary Health Care Research Institute, Australian National University, to analyze the data and write this manuscript. T. J. was further supported to analyze the data and write this manuscript by the Centre for Medical and Health Sciences Education, University of Auckland.

Declarations of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: SCIPPS was supported by an NHMRC program grant (#402793).

Author contributions

T. J. and L. Y. conceived of the study, participated in its design and coordination, and conducted interviews. All authors contributed to data analysis with T. J. leading the analysis process. T. J. wrote the first draft of the manuscript. All authors contributed to writing and editing subsequent drafts of the manuscript. All authors read and approved the final manuscript.

Consent

Written informed consent was obtained from all study participants for the publication of information that they provided during their audio-recorded interview. Efforts were taken to ensure participant anonymity in the presentation of study findings for publication (identifiably characteristics were removed and pseudonyms were applied).

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