Activity and meaning making in the everyday livesof people with advanced cancer

KAREN LA COUR, REG. O.T., M.SC., PH.D.,1,2 HELLE JOHANNESSEN, PH.D., MAG. SCIENT.,1 AND

STAFFAN JOSEPHSSON, REG. O.T., PH.D.31Institute of Public Health, Research Unit Health, Man and Society, University of Southern Denmark, Odense,Denmark2School of Occupational Therapy, University College Sjælland, Naestved, Denmark3NVS Department, Division of Occupational Therapy, Karolinska Institutet, Huddinge, Sweden

(RECEIVED February 27, 2009; ACCEPTED April 19, 2009)

ABSTRACT

Objective: This study aims to explore and understand how people with advanced cancer createmeaning and handle everyday life through activity.

Methods: A purposive sample of seven participants was recruited from a larger study. Datawere collected through qualitative interviews and participant observations conducted in theparticipants’ home environments while they were engaged in activities to which they assignedparticular value. Interpretive analysis was conducted using narrative theory and relevantliterature.

Results: The study shows how people in conditions of advanced cancer fashion narrativesuseful for handling everyday life with advanced cancer. A meta-narrative of “saying goodbyein a good way” provided an overall structure for the participants as they attempted to createdesired narratives negotiated in context of the individuals’ sociocultural life and in theproximity of death. A narrative of “being healthy although ill” provided an arena for exploringthe contrast between simultaneously feeling well and severely ill. Further emplotment ofactivities in “routines and continuity” was identified as a means to provide a safe, familiarframework stimulating participants’ everyday agency. “My little Mecca” was identified as anarrative reflecting the activity of life-confirming experiences and taking time out.

Significance of results: The identified narratives performed and told in daily life may guidethe development of palliative care services to support people with advanced cancer in creatingmeaning in the remains of their lives.

KEYWORDS: Activity in daily life, Advanced cancer, Narrative, Meaning making

INTRODUCTION

Advanced cancer often involves significant disrup-tions in an individual’s everyday life, for example,through the loss of bodily functions, of social roles,and of the capacity to engage in basic daily activities(Taylor & Currow, 2003; Zachariae & Mehlsen, 2004;Grønvold et al., 2006). Furthermore, it has beenargued that participation in meaningful activity isimportant for achieving a worthy life when facingdisruptions due to life-threatening illness (World

Health Organization, 2002). Consequently, it is im-portant to gain knowledge about how activity in dailylife is related to meaning making and may be a re-source in addressing the challenges of life with ad-vanced cancer. Therefore, the objective of this studywas to explore and understand how people livingwith advanced cancer find ways to create meaningand manage everyday life through engagement inactivity.

A number of scholars have argued that humansunderstand themselves and their participation in asocial/material world through narrative forms (Ri-coeur, 1985; Polkinghorne, 1988; Bruner, 1990; Mat-tingly, 1998). That is, the creation of meaning and

Address correspondence and reprint requests to: Karen la Cour,J. B. Winsløws Vej 9, 5000 Odense, Denmark. E-mail: klacour@health.sdu.dk

Palliative and Supportive Care (2009), 7, 469–479.Copyright # Cambridge University Press, 2009 1478-9515/09 $20.00doi:10.1017/S1478951509990472

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content in everyday life is linked to narrative proces-ses, including both verbal constructions and emplot-ments in human action, and is therefore told as wellas lived. Furthermore, Mattingly (1998), Hyden andHyden (1997), and Charmaz (1991) suggested that,in times of difficult life transitions and trauma,such as advanced cancer, people draw upon narrativeforms of meaning making. That is, people tell or en-act stories to explore and create understanding of ex-periences of disruption and change in order to findnew or alternative directions in life. Ricoeur (1985)argues that narratives do not simply mirror lived ex-perience, and he points out that the telling or enact-ment of a story is a social process of constructingmeaning. On the basis of these considerations, wefind narrative theory to be a relevant frameworkfor the exploration and understanding of possiblerelationships between activity and the creation ofmeaning and content in everyday life for people liv-ing with advanced cancer. Although many studieshave explored the narratives of people dealing withsevere illness (Hyden & Hyden, 1997; Charmaz,1999; Ville & Khlat, 2007), they seldom addresshow narratives are used in the construction of mean-ing making through the emplotment of everyday lifeactivities when people are facing imminent death.

In this study, activity is understood, in line withJackson’s (1996) definition of occupation, as the cul-turally and personally meaningful activities in whichindividuals engage on a daily basis or at varioustimes throughout their lives. Meaning making hasbeen described as a process of attaching significanceto experiences through cultural participation (Polk-inghorne, 1988; Bruner, 1990). The focus of thisstudy is on meaning making guided by the activitiesthat participants highlight as important for handlinglife with advanced cancer. According to Porn (1993),health and well-being can be understood as a per-son’s opportunity for action, where abilities andenvironment interact and influence activity in dailylife. Consequently people’s experience of meaningand well-being are not simply influenced by circum-stance but also by what they do, by what they cando, and by the ways in which they handle their situ-ation. Furthermore, Alsaker and Josephsson (2003)propose that daily activities be understood as arenasfor ongoing negotiations of engagement in everydaylife. Following that line of reasoning, activities ofeveryday life provide a relevant arena for exploringexperiences of meaning making and well-being.

In the literature, engagement in activity is ident-ified as a source of meaning, linked to experiencesof health and well-being throughout life (Breitbart,2002; Pizzi & Briggs, 2004; Wilcock, 2006). However,research on how this occurs in everyday life is sparse.Furthermore, research on engagement in activity

among people with advanced cancer has primarilybeen conducted in institutional settings (la Couret al., 2007). In previous studies, we found thatwhen people with advanced cancer engage in activi-ties like arts and crafts in a therapeutic setting,they also worked with ways of living in proximity todeath (la Cour et al., 2005, 2007). These findingsraised further questions about activity in daily lifewhen one is facing life-limiting illness, such aswhat opportunities and meanings can be createdthrough engagement in activity in the homes andin other arenas of daily living and how that takesplace. At present, there is little knowledge regardingactivity in everyday life settings from the perspectiveof individuals living with life-limiting illness. In-creasing numbers of people with advanced cancerlive at home for as long as possible toward the endof life. This brings a need for research-based knowl-edge of these people’s experiences of the role of mean-ingful activities in managing the demands andchallenges they face in their daily lives.

Existing research on activity for people with se-vere illness tends to focus on treating disease andproviding symptom relief (for depressive symptoms,for example; Hutchings, 2007), rather than exploringactivity as a potential resource in creating a mean-ingful life for the whole person living with disease.Although it acknowledges that activity may becomplex and that it may present challenges andconstraints, this study explores the potential forconstructive meaning making as an aspect of activitythat so far has received little attention.

METHODS

A purposive sample (Luborsky & Rubinstein, 1995)of seven participants was recruited from a largerDanish study exploring the daily activities of 45people with advanced cancers where cure was nolonger expected. The inclusion criteria for the pre-sent study were (1) a diagnosis of either lung cancer,colon cancer, or breast cancer (the three main cancerdiagnoses at the oncological outpatient unit wherethe study took place), (2) a variety of social situations(such as individuals living alone or cohabiting), (3) avariety of ages, and (4) individuals engaging in a var-iety of activities in their daily lives (such as garden-ing or Internet activity). The participants were fivewomen and two men between 39 and 67 years ofage. The primary diagnoses were two with breastcancer, three with lung cancer, and two with coloncancer.

The study was approved by the Danish Data Pro-tection Agency. The participants received writtenand verbal information about the project and were gi-ven time to consider their participation before verbal

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consent was obtained. They were assured that anyinformation given would be treated in confidenceand reported anonymously.

Data Generation

Data were generated in qualitative interviews(Kvale, 1996) and participant observations (Davies,2001). The qualitative interviews focused on the par-ticipants’ experiences of their daily activities. Duringinterviews, the participants were encouraged totalk about their activities. For example, questionswere posed as to how the participants experiencedthe activities they engaged in during the day andwhat activities they considered significant intheir daily lives under their current circumstances.Interviews were audiotaped and transcribed verba-tim. Data were generated over a period of 18 months,with one to three visits to the participants’ homes.A total of 12 encounters took place, comprisinginterviews and participant observation. The encoun-ters lasted between 1 and 3 hours, and participantobservations were conducted in connection with theinterviews to achieve a thorough understanding ofthe context in which participants conducted theirdaily lives and to observe the activities as they tookplace. Field notes were made up of data from partici-pant observations and were subsequently expandedinto full texts. All data were collected by the firstauthor, and an occupational therapist participatedin some of the interviews.

Data Analysis

The data were analyzed using an interpretive ap-proach based on Ricoeur’s (1985) theory of narrativeemplotment and with the reasoning of Polkinghorne(2004) and Mattingly (1998) of narrative as ad-ditional resource. Ricoeur (1985) identified narrativeas an emplotment and as the establishment of re-lations between events, actors, motives, and desiresso that these are linked in meaningful configur-ations. The analytic procedures implied, first, thatall material from interviews and participant obser-vations written into full-length text was read care-fully to get the gist of each of the individualparticipant’s narratives. Next, significant eventswere identified within the stories. Significant eventswere understood as events that people found worthtelling stories about and that could therefore be con-sidered as particularly meaningful to them (Mat-tingly, 1998). For example, participants reportedthat they had been told there was no cure for theirdisease, which was identified as a significant turningpoint motivating them to make the best of what re-mained of their lives and to “say goodbye in a goodway” as they expressed it. With the structure of a

narrative in mind, emplotments around significantevents were then identified and tentative narrativeswere constructed (Polkinghorne, 2004). This also in-volved returning to the participants to acquire moreinformation on subsequent visits. The data werescrutinized to identify narrative structures such asbeginning, middle, and end, and the plots withinthe individual stories, whether enacted or told (Mat-tingly, 1998; Polkinghorne, 2004). In that regard,plots were understood as narrative structures, withinthe participant’s description of relationships betweenthe events and choices of their daily lives, as ident-ified by the researchers (Ricoeur, 1985; Polkin-ghorne, 2004). To understand the processes ofactivity and meaning construction, the materialwas analyzed to identify the reasons and motivesthat participants used to explain the actions and cir-cumstances contributing to the narratives. Theanalytical questions concerned issues such as the fol-lowing: What narratives did the participants share?How were the narratives created? What motives gui-ded the narratives? For whom were they created?

In the following step of the analysis, commonemplotments were identified across all of the partici-pants’ narratives and reconstructed into a fewnarratives conveying those significant to the partici-pants. As an example, a common narrative of “I amhealthy although I am sick” showed how the partici-pants in various ways created narratives throughwhich they could claim being both healthy andsick, according to specific situations and the de-mands and tasks implied in these. After the firstauthor had conducted the initial analysis of data,these findings were discussed with the coauthors,who then contributed ideas for continued analysis.The final interpretations agreed upon by allauthors were finally presented to a group of seniorresearchers and fellow doctoral students in apeer review.

RESULTS

Based on the analysis, a central narrative was ident-ified as the meta-narrative of “saying goodbye in agood way.” Within this meta-narrative, three smallernarratives evolved and were identified as “I am heal-thy although I am sick,” “routines and continuity as aplatform for agency,” and “my little Mecca.” In thisarticle we use the term “meta-narrative” to refer tothe overall plot that sets the framework for a numberof smaller plots and narratives, that is, as a term re-ferring to what Mattingly (1998) calls a story thatholds smaller stories within it. The names given tothe narratives derived either from quotes from theparticipants or from suggestions by the authors.

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“Saying Goodbye in a Good Way”

“Saying goodbye in a good way” was identified as ameta-narrative that seemed to be of importance toall participants and guided what they did and howthey managed everyday life. Although cancer treat-ment has advanced considerably, cancer still tendsto be associated with fear, suffering, pain, and death,which thus presents the sociocultural context forhaving to live with advanced cancer (Zachariae &Mehlsen, 2004), and all participants shared a genu-ine concern about this.

All of the participants gave an account of their ex-perience of the discovery that they had cancer, eventhough they had not been prompted to talk about it.Most participants said that it had begun with subtlesigns such as pains, and how these spurred growingsuspicions of the onset of a severe cancer or a recur-rence of previous cancer. However, this time theparticipants confronted the fact that they could nolonger expect a cure. This recognition of incurablecancer appears to be a turning point and the begin-ning of a new meta-narrative. Yet, the participants’emplotment of narratives seemed far from being alinear process; it was rather as though cancer ledthe participants on journeys that appeared to beunder constant construction. Throughout our meet-ings, participants brought up issues they had toface in order to say goodbye in a good way, withoutknowing when that goodbye would actually be. AsElla, 46, living with her husband and three children,said:

I’ve been told there is no cure for my disease andtherefore I have to employ my time so that it be-comes a good and meaningful way forwards. Wesay goodbye in a good way; we get something outof it, not because the goodbye is just around thecorner, but you never know.

The fact that there was no cure implied living withdeath on the horizon, which possibly motivated Ellato narrate and conduct her life by “saying goodbyein a good way.” In narrative theory Mattingly (1998)proposes that storytime is organized as “movementtowards endings” (p. 85). In Ella’s example “sayinggoodbye” can be seen as such a narrative structureof moving toward the end of life, initiating the narra-tive that Ella outlines. Furthermore, saying goodbyeis not just about Ella, for her inclusive “we” tells usthat it also embraces saying goodbye in interactionwith the family and the people she cares for, whichseems to motivate her to shape the story of sayinggoodbye “in a good way.” So with this plot Ella expres-ses the drive to live the life that remains to her “in agood way” and to have that drive direct her activity.

Ella further reflected on activity with her family:

[W]hat I think is most important is that afterwardsmy children, my husband, and my friends can saythat it was fun after all, that it was really a greattime. . . . Now tomorrow we are going to a party—I’m looking forward so much to being with ourfriends on the beach. There we are not going totalk about illness—we will have fun. My husbandhas taken the day off, and we are going to havered wine and that’s how it should be!

It seems that the narrative of “saying goodbye in agood way” influences how Ella values and engagesin activity so that the prospective end of life framesactivities that are performed in an attempt to createthose impressions and memories that she hopes toleave with her family.

Similarly, other participants also shared narra-tives of intentions to stage a “goodbye in a goodway.” Chris, a man in his early 50s living with hispartner and their son, suffers from advanced lungcancer and said that he found it very unfair that hehad got cancer. How he appeared to others was im-portant to him, as was how he handled his situation.He said,

And those cases where you hear—‘well then he sitsin the corner and is bitter and sleeps all the time’, Idon’t want to be remembered like that. . . . I don’tthink I am perceived as negative; . . . humor iswhat I try to survive on.

Chris points out that sitting apathetically in a corneris not how he thinks people should behave when se-verely ill, indicating that to him it is better to takepart in life. He has concerns about the impressionshe makes and connects this to the end of life in hisnear future and to the memories others would haveof him. In this, Chris seems to express a desire to“say goodbye in a good way,” which governs the storyhe creates and his way of life.

Chris and Ella, like most of the other participants,struggle to create narratives that emphasize positiveand constructive approaches to living with the uncer-tainty of when life will end. With this “positive” nar-rative framework for saying goodbye, they possiblyattempt to minimize the sorrow that they fear theymay cause the family and ease the burden they them-selves are experiencing.

From the onset of the recognition of advanced can-cer it seems that participants integrate their desiresto say goodbye in a good way into their everydayactivity. This finding seems further supported bythe identification of smaller narratives of “being heal-thy although sick,” by creating “continuity and

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routines” and by comforting and enriching experi-ences associated with “my little Mecca.” This bringsus to the next narrative.

“I Am Healthy although I Am Sick”

In this narrative the participants emphasize the im-portance of being healthy although severely ill. Withits positive focus, this narrative can be seen to sup-port and strengthen the ideas embedded in themeta-narrative of saying goodbye in a good way asthe “good” way is more about the health-associatedaspects of life rather than about being sick.

“I am healthy although I am sick” is a narrativethat holds suspense in the contradiction betweenbeing healthy and sick at the same time and the chal-lenge of how such ambiguity can be handled. “I amhealthy although I am sick” was narrated in variousways. Participants talked about juggling experiencesof being healthy although sick in encounters withother people and in the ways they approach and con-duct activity. For example, Rita alternated betweentalk about walking the dogs, which she associatedwith being healthy, and talk about her illness. Fur-ther observations in the homes identified how par-ticipants conducted their lives both as sick andhealthy; they kept up ordinary activities and at thesame time were heavily affected by the disease. Theparticipants not only told narratives of being healthyalthough sick; through their activities they alsostaged being healthy although sick as a form of enac-ted narrative. For example, both Linda and Bethwere observed one moment making coffee and thenext needing help carrying the milk because it wascold, and the side effects of chemotherapy preventedthem from carrying cold items. In that regard, enact-ing a narrative of being healthy although sick isnot just a matter of choice but also a mirroring ofthe women’s reality.

The complexity of being both sick and healthy wasalso part of Linda’s narrative. She was a young wo-man of 39, divorced and living with her two teen-agers. She talked about projects she wanted to doand said, “It’s nice to do things because there is noth-ing wrong with my head. It’s only my body that can-not keep up.” Here Linda shared on one hand herdesire to do something—activity in itself thus seemsto be a symbol of health and well-being—and on theother the reality of not being able to enact activitydue to the physical deterioration and restraintscaused by the cancer. Linda’s example calls attentionto an experienced split between body and mindregarding what she would like to do and whatshe is capable of doing. In addition, as Linda empha-sizes being well and diminishes the illnessaffecting her body, she narrates herself as healthier

rather than sicker and so supports impressionsof “normality.”

The notion of being capable of activity is addressedin the narratives of several participants and relatesto the notion of being healthy. This comes to ex-pression as participants share how, through activity,they enact a manifestation of being “healthy.” Forexample, when one arrived at Beth’s house, the drive-way, the garden, and the house were all neat and tidy;no garden tools or superfluous objects were visible.Beth said:

Sweeping the driveway, I know it’s stupid for me todo it [since it causes pain] but I also enjoy feeling,what shall I say, healthy and . . . capable of doingsuch chores.

Despite the pain, Beth gave priority to an activitylike sweeping as it confirmed her sense of being heal-thy; that she could accomplish such chores wasliterally a bodily manifestation of competence, andthus it became a significant event in her emplotmentof being healthy although she was sick. Another nar-ration of “I am healthy although I am sick” concernedsocial activity. About going to a party Ella said:

It means so much to me not just to be a patient allthe time. I think that’s almost the hardest partabout this. For example, when we attend a partyat the school . . . then it’s as if people, . . . that Iam afraid that people think when we are sittingat a table, that they feel obliged to sit and talkabout illness with us, not that they don’t comeand sit at our table, but I can sense when they docome . . . where you normally would say, ‘Hi how’sit going? Isn’t it a great party?’ to us they say ‘Hi,how are you? Are you still in treatment? How’reyou managing?’ . . . My husband says, ‘Relax,’ butto me it is an enormous loss of prestige.

Ella attended social activities at her children’sschool, which Danish families commonly do. Thisis associated with normality and health, but shebelieved that other people felt intimidated by herillness and obliged to inquire about it. Furthermore,she felt reduced to “the sick person” and thatreduction made her feel a loss of face.

Ella’s narrative shows her creating her own dramathrough the constant tension between experiences ofbeing simultaneously healthy and severely ill. Nar-rative time is dramatic, and Mattingly (1998, p. 85)proposes that, in times marked by conflict, there isan implicit dialogue between different points ofview. In Ella’s example above, the drama is in the con-flict between, on the one hand, being sick and, on theother, being involved in what she considers as

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“normal and healthy” activity and having thatactivity recognized. This tension forces Ella to nego-tiate her situation of being both and reflects the factthat to enact a sense of “normality” in the socialarena of daily life is not without friction.

Like Ella, Leo, who was living alone but in closecontact with his ex-wife and children, shared a storyabout balancing sickness and health:

I do not want to be a cancer patient in chemother-apy, I don’t. . . . I have been conscious of it all thetime; it should dominate everything as little aspossible. I am not bothered by anything. I think Ilive a totally normal life and no one can tell fromlooking at me that I am a cancer patient. I havedone something about it because I know that Idon’t want to walk about looking like someone onearly retirement and a cancer patient, bald andscuttling sideways with a walker. I have been solucky!

Leo’s story accentuated the importance of appearingand acting healthy in social situations in order not tobe identified as a cancer patient. At the hospital healso always made sure he sat in a chair, not in bed.He explains being healthy although sick as a combi-nation of luck in not suffering from stigmatizingside effects (like loss of hair) and of his determinationdeliberately to lead everyday life like everyone else.Yet, on another occasion, Leo admitted that he wasfighting to resist lying on the sofa several times aday, which seems a contrast to his assertion that hewas leading a normal life.

The above examples call attention to the contextsin which people find themselves and the ways inwhich they may influence the construction of beinghealthy although sick. That was exemplified byElla, who reported how her children treat her as amother even when she is vomiting. In such a situ-ation her daughter once asked her, “Are you done,Mom? Because I need to talk to you about a pair ofjeans I saw downtown,” and Ella comments, “It’s in-credibly rude, but also very life-confirming.” In thisexample Ella expressed her appreciation of themother role and also of the way her children suppor-ted or “forced” her to remain a mother who couldattend to “mother issues” whether severely ill ornot. The children’s expectations of Ella and the waythey treated her can be viewed as exemplifying theinfluence of the sociocultural context on the narrativemeaning making. Ella’s narrative is not just con-figured by the immediate environment of family,however, but is also influenced by her struggle tomaintain social roles and prevailing norms that sup-port the positive connotations of being active andhealthy.

Routines and Continuity as a Platformfor Agency

The next narrative concerns routines and continuitythat seem to be associated with order and securityamid the humdrum of everyday life while providinga platform for agency. This narrative also subscribesto the meta-narrative of saying goodbye in a goodway, as routine activity and continuity convey the re-assuring sense that life goes on in the midst of life-limiting illness.

Rita, a 63-year-old mother of two adult childrenand living with her husband, spoke about her dailylife structured around firm routines and rituals.Rita stated, “I love my routines” and referred to hercoffee in the morning and the regular grooming andwalking of her dogs. Further, she said:

It is impressive, my illness has lasted for 15 yearsand when I first got ill my neighbor made thispath around the fields where I could walk andscream and really act out. And I did that formany years. . . . Actually it wasn’t until I got sickthe second time, 5 years ago, that my neighborstarted walking with me. It’s so funny becauseshe has had this wonderful field to walk in butshe never did. . . . But I knew everything much bet-ter than her. So I’ve taught her a lot out in the fieldabout birds and suchlike. We do it every day. . . . Ihave rituals for everything from when I get up at6:50 in the morning.

Rita has walked around the field over and over, andwithin that routine she found space where she couldshout out her frustration and sorrow about her ill-ness. Simultaneously, that same context has stimu-lated her to gather information about birds andnature, which she then taught her neighbor. Thedaily walk is emplotted as a routine that helps Ritain her everyday life and at the same time forms aplatform for developing an expertise that enabledher to give something back to the neighbor. Thisbears a relation to narrative theory, which suggests(Ricoeur, 1985; Mattingly, 1998) that the self is com-posed of an ongoing stream of continuity that func-tions to ensure sameness over time, interwovenwith discontinuity characterized by change and hu-man development. In Rita’s case we see continuityenacted in the daily dog walk and qualities of discon-tinuity in finding ways to rid herself of frustrationsand engage in new dimensions of exchange andfriendship with her neighbor.

Leo said he always liked to cook, and for fun his fa-mily gave meals stars for quality. Arriving at Leo’shouse, the first author observed that he had set thetable with neatly folded napkins, wine glasses, and

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homemade sandwiches. He had made lunch for us,although the interview was before noon. It seemedthat Leo used the occasion, in this case of two peoplecoming to interview him, as an opportunity to pre-pare a meal, a favored activity. Leo has always en-joyed cooking, and creating a homemade lunch canbe seen as an enactment of continuity, supportinghim in taking agency. Both Rita and Leo seem tointegrate and emplot aspects of continuity in theirdesired activities. By conducting activity that theyhave always engaged in, they enact the continuityof daily life; it is not so bad and has not changedmuch despite severe illness, which, in turn, contrib-utes to the meta-narrative of making it a good waytoward their end. They do as they have always doneas a way of emplotting each day as usual, whichmay, in turn, give the impression of control and nor-mality. In addition, striving for days to be “normal”seems to provide a platform from which the partici-pants explore new forms of activity and approachesto everyday life.

“My Little Mecca”

“My little Mecca” is a narrative in which, despite thedespair accompanying the loss of basic skills, partici-pants seem to find their own ways of performingactivities that enable them to access individualresources facilitating experiences of pleasure, conso-lation, and enrichment. During an interview Ellasaid,

I’m in the garden as much as possible and I “force”Niels [her husband] to carry the heavy things be-cause I am the only one in the family who reallycares for the garden. I give it high priority.

Interviewer: And what is it about the garden?

Ella: It’s just so wonderful, because it’s life, it growsout of the soil. I cut and weed and I imagine theseflowers blossoming.

Here the symbolic meaning of the flowers growingand representing life in the light of Ella’s situationfacing life’s end is significantly life-confirming.Once Ella showed us her greenhouse, pointed out aplant, and said “I didn’t think it would survive thewinter but look how it is growing now.” Ella did notthink she would survive herself, and while still alivepossibly found a sense of hope in working with theplants that can be seen as symbolically mediatingher desires and actions. Through the plant-growingactivity it seems that Ella is able to approach existen-tial issues in her own situation. This relates to thenarrative function of distanciation. On the under-standing that every emplotment is one configuration

of meaning out of myriads of possible emplotments,Ricoeur (1985) argued that distanciation may func-tion as a loop in providing space and freedom fromreality to shift ways of understanding of a given situ-ation. For example, in Ella’s case, it is conceivablethat by gardening she can distance herself from hersituation of cancer and impending death. At thesame time, gardening can symbolize Ella’s situationand become a means of creating meaning in hercurrent circumstances. That is, by working withplants and nurturing them so that they survive andblossom, she comes into contact in the plant worldwith aspects of life and death, hope, and survival asa parallel to her own situation. Following Ricoeur’s(1985) line of reasoning about distanciation, Ella’sinvolvement in growing flowers is a way to extendthe possibilities for other interpretations of hercurrent situation.

On a later occasion Ella explained that, “Just car-rying the soil is a major problem for me, and I canspend 3–4 hours just on a project of making this littleflower grow. That isn’t something I can entertain thefamily with. They couldn’t care less. It’s my littleMecca.” Ella underscores her investment in garden-ing, and, with the Mecca image, she underlines themeaning and importance of the activity. Moreover,through the emplotment of gardening activity asMecca, Ella seems to create a space for activitythrough which she can achieve experiences of enrich-ment and completion.

Another example of creating an individual“Mecca” is given by Beth, who enjoys painting anddecorating her house. She said that, if it was up toher, she would repaint the house every second year.Beth once ran a kindergarten at home but stoppedthat due to illness. Her own children are grown up,yet Beth wished to keep and decorate a children’sroom. She had painted it in bright colors with match-ing curtains and made wall decorations herself. Thedecorations were children’s pictures downloadedfrom the Internet, painted in her favorite colors andlaminated. According to Beth, she used this roomwhen feeling ill, and she said, “It gives me something,so now I have a bed in that room; it gives me peace.”Beth described how she turned the room into herown, using her creative capacities and even makingit a place that was soothing to her when feeling ill.Like Ella, Beth crafted narratives about a certainkind of activity through which she accessed herown resources and created something pleasurable.The example illustrates how experiences of richness,consolation, and completion are created through nar-rative processes of emplotment developed throughactivity.

The above stories show how certain activities canrepresent spaces that are both a physical place, a

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materialized creation communicating the individ-ual’s creative forces, and a life-confirming expression.However, these activities must be understood in acontext that comprises the daily struggles of suffer-ing and being severely ill in a situation of limited re-sources. In that context the individual is trying toestablish some sense of “being healthy” and “makingthe best of it.” As Ella said, moving the soil was a bigproblem for which she needed her husband’s help,and thus she pointed to the obstacles that may be in-volved in creating a Mecca. It is not an easy task but achallenge for individuals who are sick to build thenarrative space in order to carry out activities thatare important to them. Within these activities theyfind opportunities for taking the initiative and appre-ciating their lives as meaningful.

DISCUSSION

According to Ricoeur (1985), the trustworthiness ofnarratives is a question of the plausibility of the plotsidentified as well as their explanatory potential inrelation to existing knowledge. Therefore, we haveattempted to address the plausibility of the findingsin this study in the following discussion, while weacknowledge that the narratives identified can onlyrepresent a selection of potential interpretationsout of myriad possibilities. In that regard it shouldbe noted that narratives are not simply a recountingof what happened. Narratives are meant to persuadethe narrator and the audience (Mattingly, 1998) andmust be seen as co-constructions in the meetingbetween the participant and the researcher. Hence,the narratives presented in this study are configur-ations developed from experiences and events asthey are told by the participants and reordered bythe research team in an attempt to understandways of meaning making for people living withadvanced cancer.

The aim of this study was to explore and under-stand how people with advanced cancer create mean-ing and handle everyday life through activity. Theresults illustrate that the participant’s everyday lifeis directed toward the future, and, in the case of theseindividuals, that means toward the time before theend of life. “Saying goodbye in a good way” was a nar-rative prompted by the diagnosis of an incurable can-cer, and thus the narrative has a distinct beginning,but it extended through the present toward the fu-ture in that it was identified as guiding the partici-pants in their everyday life and providing for anemplotment of everyday activities that reachedbeyond the activities per se. Therefore the narrativestructure of beginning, middle, and end can be con-sidered as constantly developing. The implicationsof “saying goodbye in a good way” captured not only

what participants talked about but also what theydid, seemingly guided by their concern with life andtheir awareness of imminent death and of a timeafter they have died.

According to the sociologist Erving Goffman(1971), social interaction implies that people positionthemselves dramaturgically in ways that support theimpressions they give of themselves with the aim ofsupporting social approval and self-enhancement.Within this framework, the participants’ insistenceon being active and maintaining their good humorcan be seen as a position they adopt in order to handleconcerns about having cancer and to avoid becominga burden to the family. In this way they mobilize cer-tain narratives that present favorable impressionsintended for family and friends, who in turn becomeaudiences. With the ideas of Goffman (1971) in mind,we can see how the findings from this study illustratethe way in which the participants’ narratives are notonly negotiated to the advantage of the person withcancer but also serve the needs of family and the im-mediate social context. As Goffman (1971) empha-sized, the performer is not only performing for anaudience, but at the same time becomes the viewerof the performance of the audience. In this way, theemplotments and narratives created through dailyactivities become frames for social interaction be-tween the sick people and those around them, andthe audience–performer relations are active onseveral levels simultaneously.

As we followed the evolvement of narrativesthrough series of events, the meta-narrative of “say-ing goodbye in a good way” seemed to imply severalsmaller narratives. One important narrative re-volves around the desire to be healthy and not justconcentrate on illness. This finding relates to a studyby Salander et al. (2000), in which they proposed that“time of everyday life” and “time of disease” were co-existent for people with cancer. However, in contrastto the distinction proposed by Salander et al. (2000),the results in this study identified that being healthyand severely ill were perceived as coexisting throughactivity. Thus, the complexity of life with advancedcancer reaches beyond distinctions between “time ofeveryday life” and “time of disease” and implies ques-tions about how people negotiate experiences of beingboth severely ill and being healthy. To discuss howthe participants in this study used the narrative ofbeing healthy although sick, it may be useful todraw on Merleau-Ponty (2002), who stated thatpeople are in the world by virtue of bodily experi-ences, sensory processes, and associations that helpgive directions and meaning. Merleau-Ponty (2002)suggests here that meaning and experiences of beinghealthy are linked to physical activity. In this study,when the participants drink red wine with friends

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or sweep the driveway despite the pain, these activi-ties can be seen as examples of how activity is used tonegotiate and shape time and construct stories ofbeing in the world—healthy although sick—throughembodied practice.

Furthermore, the results demonstrated that sev-eral participants experienced a sense of being intimi-dating to others due to severe cancer; they no longerfelt treated in the usual way and associated this witha loss of social recognition. These feelings relate totheoretical concepts of the stigmatized person who,in some respect, has changed from a normal personto a discounted person (Goffman, 1963). The findingsthat participants felt stigmatization and negotiatedsuch experiences show that their narrative explica-tions may be a means to interpret and give meaningto deviations from “normal” states of the humancondition in order to negotiate the idiosyncratic (ofhaving an advanced cancer) and make it sociallyacceptable for the individual. In that regard theparticipants’ narrative of being healthy althoughsick might be viewed as a pointing toward a certainview of themselves as a way to breach the tensionin their situation and the diversity that severe cancerrepresents. In this way individuals with severe can-cer may counteract the misery of their illness byusing activity to engage and enact the characterthey are and that they would like to be. Moreover,these crafted narratives not only provide ways to ex-plore and experience the fluid boundaries betweenbeing sick and being healthy but also generatehealth-associated activity that can be viewed as anactive resistance toward the illness itself and towardthe way in which participants are seen by otherpeople and society.

The emplotment of activity as a set of routines wasidentified to provide a safe and familiar frameworkthat structured everyday life and from which agencywas stimulated. Similar findings were highlighted byLuoma and Hakamies-Blomquist (2003) in a study ofwomen with advanced breast cancer, who strived tokeep their life as normal as possible by continuingto engage in activities similar to those they were en-gaged in prior to becoming ill. By narrating routinesand threads of continuity, the severely ill person mayconstruct platforms from which it is possible to takeaction and influence their situation while allowingfor change and transformation. Strauss (1993)made a similar point when he addressed the relation-ship between routines and nonroutines and suggeststhat routine can initiate innovation and creativity. Asour study shows, everyday routines may providespace for trying out alternative ways to understandthe situation. Furthermore, Mattingly (1998) arguedthat repetition, as identified in everyday routines,can represent hope, which is especially important

when one is facing incurable illness. Thus, by empha-sizing routines the person with advanced cancer mayexperience a sense of hope, embedded in moments ofactivity repeatedly returning in daily life. In additionit appeared that through familiar activity such ascooking, the participants found ways to constructand embed new meanings in an activity they hadpursued before their illness. These can be seen asways of using activity to transcend the losses that fol-low upon advanced cancer. These results are in linewith other studies (Bury, 1982; Charmaz, 1991;Hyden & Hyden, 1997) showing how, in times ofdisruption, people do biographical work by trans-cending their experiences through narration.Contributing to such ideas, this study provides em-pirical insights into how biographical work maytake place, not only through verbal narratives butalso through emplotment of routine activitiessupporting new ways of daily living in the midst ofadvanced cancer.

The narrative of “my little Mecca” is noteworthy,as it was identified as representing a backdrop forthe individual whereby she can renew her energyand take a break from the pressure entailed in thequest of having to stage everyday life as saying good-bye in a good way. Our finding that activities provideplace and space for revitalization and recharging re-sembles findings from a study by Ohlen (2000), whoidentified meanings of palliative care as alleviationof suffering and a lived retreat. In parallel Lawton(2000) also found that palliative care could be experi-enced as a retreat. This study complements thosestudies in showing that retreat can be createdthrough engagement in activity in various contextsof everyday life.

Polkinghorne (1988) suggested that narrative canorganize and connect events and experiences overtime. The narratives identified in this study, whethertold or enacted, demonstrate how people use activityover time to create spaces for creativity and meaningmaking. The flowers grow over time, redecorating thehouse takes time, and likewise the rituals and rou-tines presented in the narratives involve time as acrucial factor. Time becomes significant, and narra-tive plots that organize time become inevitable asways to negotiate life and death, health and illness,and the existential issues involved. Such ways ofcreating meaning and meaningful moments maynot differ much from what most healthy people do,but, in the persistent awareness of the end of life, ex-istential concerns impact on the activities that peopleundertake and the way in which a storyline such as“saying goodbye in a good way” is cast.

Furthermore, the awareness of death may provokean enhanced need for proximity to life and meaning,which spurs people to engage in activity through

Activity and meaning making in everyday lives 477

which they narrate a good life in the face of theircircumstances. However, as the empirical materialshows, the influence from the social world shouldnot be underestimated as regards the ways in whichpeople with advanced cancer narrate their currentsituation. Moreover, wanting to “say goodbye in agood way” is also influenced by contemporary percep-tions of death and dying in Western society, hencedepicting current discourses in social life. Murphy(1990) drew attention to a similar trait when he poin-ted up the key social rule for being a successful sickperson: “Don’t complain.” Given this idea, the meta-narrative of “saying goodbye in a good way” may bean emplotment that serves to fulfill the social roleof the “good” sick person. Murphy (1990) elaboratedon the idea and explained that, confronted with a fu-ture fraught with danger and uncertainty, most sickpeople admit to what, from the outside, may comeacross as courage in taking a positive attitude. ToMurphy, however, this seems a form of disembodi-ment and a necessary strategy. Hence, by emplottingdaily life as “saying goodbye in a good way,” the par-ticipants seem to take on a tremendous task in con-stantly having to strive for “the good way” in spiteof their suffering. Indeed, creating meaning in whatremains of life in the face of death is not only guidedby a personal quest to appear healthy, by a striving tomaintain routines, or by the creation of spaces forcompletion. It is also determined by socioculturalenvironments and rules.

In summary, the findings of this study contributeto the understanding of engagement in activity andmeaning making in daily practice. By approachingexperiences of activity from a narrative perspective,the study identifies how activities provide peoplewith arenas for creating alternative meanings andstrategies useful in handling everyday life withsevere illness. Through activity, people embody theirsituations and create meaning under circumstancesthat are fluctuating and ambivalent. These insightsmay guide the development of palliative care servicesto develop support of engagement in activitiesthat facilitate experiences of being healthy, helpto establish routines to carry people through difficultdays, and help to create spaces where they cantake time out and experience enrichment and com-pletion.

ACKNOWLEDGMENTS

We are grateful to the participants who shared insights totheir daily life under circumstances of severe illness. Thestudy was supported by the Danish Cancer Society, StorStroems Amt, the Medical Region III fund, and the Centrefor Health Care Sciences (CfV), Sweden.

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