How older people with incurable cancer experiencedaily living: A qualitative study from Norway

SIGRID HELENE KJØRVEN HAUG, RN, MPR,1 LARS J. DANBOLT, PH.D.,2

KARI KVIGNE, PH.D.,3 AND VALERIE DEMARINIS, PH.D.2,4

1Center for Psychology of Religion, Innlandet Hospital Trust, and The Norwegian School of Theology, Oslo, Norway2Centre for Psychology of Religion, Innlandet Hospital Trust, and The Norwegian School of Theology, Oslo, Norway3Hedmark University College, Department of Public Health, Institute of Nursing and Mental Health, Elverum, Norway,and Nesna University College, Institute for Nursing Education, Nordland, Norway4IMPACT Research Program, Public Mental Health Promotion Area, Uppsala University, Uppsala, Sweden

(RECEIVED June 27, 2014; ACCEPTED July 20, 2014)

ABSTRACT

Objective: An increasing number of older people are living with incurable cancer as a chronicdisease, requiring palliative care from specialized healthcare for shorter or longer periods oftime. The aim of our study was to describe how they experience daily living while receivingpalliative care in specialized healthcare contexts.

Method: We conducted a qualitative research study with a phenomenological approach called“systematic text condensation.” A total of 21 participants, 12 men and 9 women, aged 70–88,took part in semistructured interviews. They were recruited from two somatic hospitals insoutheastern Norway.

Results: The participants experienced a strong link to life in terms of four subthemes: toacknowledge the need for close relationships; to maintain activities of normal daily life; toprovide space for existential meaning-making and to name and handle decline and loss. Inaddition, they reported that specialized healthcare contexts strengthened the link to life byprioritizing and providing person-centered palliative care.

Significance of results: Older people with incurable cancer are still strongly connected to lifein their daily living. The knowledge that the potential for resilience remains despite aging andserious decline in health is considered a source of comfort for older people living with thisdisease. Insights into the processes of existential meaning-making and resilience are seen asuseful in order to increase our understanding of how older people adapt to adversity, and howtheir responses may help to protect them from some of the difficulties inherent to aging.Healthcare professionals can make use of this information in treatment planning and foridentification of psychosocial and sociocultural resources to support older people and tostrengthen patients’ life resources.

KEYWORDS: Cancer, Palliative care, Aging, Phenomenology, Experience

INTRODUCTION

In Western countries, an increasing proportion of pa-tients in specialized healthcare contexts are olderpeople living with incurable cancer as a chronic dis-ease, requiring palliative care for shorter or longer

periods of time (Norwegian Directorate of Health,2013; Hall et al., 2011). Older people face differenttypes of adversities than other age groups, includingincreased levels of multiple and life-threatening ill-nesses; loss of social influence and close relationships(Allen et al., 2011); and changes due to the agingprocess itself (Baltes et al., 2006). Older people’sexperiences of living with incurable cancer are thusmanifold and complex. About half of all cancers inNorway are diagnosed in people aged 70 and older

Address correspondence and reprint requests to: Sigrid HeleneKjørven Haug, Innlandet Hospital Trust, Centre for Psychology ofReligion, P.B. 68, 2312, Ottestad, Norway. E-mail: sigrid.helene.kjorven.haug@sykehuset-innlandet.no

Palliative and Supportive Care (2015), 13, 1037–1048.# Cambridge University Press, 2014 1478-9515/14doi:10.1017/S1478951514001011

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(Cancer Registry of Norway, 2014). This age groupcomprises the largest segment of hospitalized pa-tients, and cancer is the second most frequent causeof hospitalization between the ages of 70 and 79(Mundal & Thonstad, 2013). This situation repre-sents a major challenge for specialized healthcarein the years to come. Nevertheless, the quantity of re-search on older people in palliative care remainsquite limited (Andersson et al., Hallberg & Edberg,2008; Evers et al., 2002; Goldstein & Morrison,2005; Hammond et al., 2012).

Experiences of Being Connected to Life

Patients with incurable cancer seem to have in com-mon experiences of being connected to life. This is re-ported in research studies with patients rangingfrom age 20 and above, and with both shorter andlonger life expectancies. Sand and colleagues (2009,p. 19) employ the concept “links to life” identified as“togetherness, involvement, hope, and continuance.”Such links protect against the hurtful feelings con-nected with death. Similar findings are noted by Sæ-teren and coworkers (2010, p. 814), highlighting howhope, framed as “latching onto life a bit longer,” is theoverarching theme with subthemes: “to live normaldaily lives,” “to take care of next of kin,” “to achievehope,” and “to experience personal growth.” The sig-nificance of hope for a life-oriented attitude is ex-plored in several studies in palliative care (Benzeinet al., 2001; Devik et al., 2013; Maher & de Vries,2011).

Continuity and the significance of close relation-ships are central themes when focused on daily liv-ing. Continuity includes undertaking the samenormal and meaningful activities as before the ill-ness occurred, and also maintaining the same frame-work in relation to meaning. Meaning is specifiedas belief, either in God or one’s own capacity(McTiernan & O’Connell, 2014). One metastudy onspirituality concludes that affirmative relationshipsconstitute the most influential dimension in spiritu-ality (Edwards et al., 2010). A study with olderpatients aged 70–89 living at home concludes thatinvolvement in the activities of daily life enablespatients to focus on living despite a lower level offunctioning (Sviden et al., 2010). La Cour andcoworkers (2005) find that engagement in creativeactivity strengthens daily life connections for olderpeople aged 70–79 in nursing home contexts. Conse-quently, they engage more actively while facing theuncertainness about the outcome of the disease. Ina study by Andersson et al. (2008), the main findingis that older people aged 75–100 in municipal careare turned inward during the final stage of life inorder to come to terms with past and present. Simul-

taneously they are able to enjoy the small activities ofdaily life and feel important to others. Devik and co-workers (2013) find that a life-oriented attitude ispresent despite the suffering in older people aged71–75 receiving life-prolonging chemotherapy inspecialized healthcare settings.

Experiences of Oscillatory Movement

Different types of oscillatory movements are reportedto be frequently present in many patients with incur-able cancer. This movement is described in variousways. First, it is described in existential terms: a pen-dulum between life and impending death (Sandet al., 2009), and between hope of good health andreconciliation with life and death (Benzein et al.,2001). A second way is to relate the movement tohealth-related concepts such as illness and wellness.According to Lindqvist and colleagues (2006), loss ofwellness is provoked by bodily problems, also remind-ing the person about the fatal illness. Maher and deVries (2011) emphasize the psychological aspects ofliving in a pendulum of uncertainty. Third, thistype of movement is understood as a comprehensivemovement between health and suffering, where suf-fering disturbs the desire for wholeness and integrity(Sæteren et al., 2010). The fourth way is to emphasizethe emotional aspect. The emotional struggle mightdiverge from how one wants to behave, thus experi-enced as conflicting and causing turmoil (McTiernan& O’Connell, 2014). Finally, the movement is de-scribed as a relational struggle. Older people strivetoward dignity, which means to be as self-sufficientas possible in order to reduce the feeling of being aburden to others (Andersson et al., 2008).

Resilience in Gerontology Research

In the last decades, increased attention in geronto-logical research has been given to growth, resilience,and subjective well-being in aging, while also takingthe knowledge of decline and loss into account (Allenet al., 2011; Baltes et al., 2006; Clark et al., 2011). De-fining resilience is not easy, as different understand-ings are employed. The most common understandingviews resilience as a “process of adaptation to adver-sity” (Allen et al., 2011, p. 2). Clark and colleagues(2011, p. 53) suggest a process-oriented frameworkcalled the “resilience repertoire,” understood as a“supply of skills and resources” in older people. Thesecan be applied to reduce the negative consequences ofdifficult events. In some cases, this activation caneven lead to positive growth and development. Theactivation of the “resilience repertoire” involves a dy-namic interacting relationship between contextualfactors and the individual over time. This leads to amultitude of ways of using the “repertoire” on an

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individual level. The variation is further influencedby some central factors that go into the “repertoire”:specific challenges such as a chronic illness, influenc-es from one’s life story, and meaning in life. A chronicillness such as incurable cancer involves negativeand additive effects over time, which enhances theprobability of decreased resilience. Influences fromone’s life story refer to a process where previous lifeexperiences are ascribed to adversities in such away that it enables continuity and constancy acrossa lifespan. Research on resilience and meaning inlife shows that meaningful relationships with others,spirituality, and meaningful activities are key factorsin the health and resilience of older people.

On this basis, Clark and coworkers (2011) arguethat the “resilience repertoire” can be useful as a con-cept for understanding the process of how older peo-ple adapt to adversities, and how their responses mayhelp to protect them from some of the difficulties in-herent to aging. In addition, an understanding ofthe referred factors that go into the “repertoire”might clarify and suggest areas for possible interven-tions. Thus, the “resilience repertoire” may be sup-ported and enhanced by the environment.

Resilience in Older People in Palliative CareResearch

Resilience in older people has been examined in somepalliative care studies from the United States. Pentz(2008) applies a similar definition as Allen and co-workers (2011) from gerontology research in a studyof older people aged 65 and above living at home.Based on the finding that older people utilize their re-sources for the benefit of others, he recommends add-ing the possibility of growth to the understanding ofresilience. Nakashima and Canda (2005) argue thata comprehensive understanding of resilience is need-ed in order to get a holistic overview of the process.They find that older people aged 65–103 hospitalizedin a hospice unit apply knowledge derived from meet-ing demands in their life history as a part of the resil-ience process. A common feature in these two studiesis that access to social and environmental resourcesand spirituality are central resilience factors. In hos-pice contexts, the identified environmental resourcesare stability, effective symptom management, and astrong dyad with the caregiver. In this connection“spirituality” is used in the broad sense, with sub-themes such as the search for a sense of meaningand purpose in life (Nakashima & Canda, 2005).

The Norwegian Context

The development of palliative care in Norway, asthoroughly documented by Strømskag (2012), hasgone through major changes during the last 35 years.

He describes the development as quite dramatic,moving from an idealistic and social movement to-ward a specialized field that has had some interna-tional influence. As a result, palliative care hasbeen included in the public healthcare system (Hau-gen et al., 2006; Norwegian Directorate of Health,2013). This system, which is cost-free for all citizens,is divided into three levels. The first is primaryhealthcare, organized by and established in eachcommunity. The second level of specialized health-care is located in somatic hospitals in each of the 19national counties. The third level is highly special-ized healthcare, which is organized in each of thefive health regions in Norway.

Conceptual Clarification

The present study is placed within the overarchingperspective described in the WHO definition of palli-ative care: “the prevention and relief of suffering bymeans of early identification and impeccable assess-ment and treatment of pain and other problems,physical, psychosocial, and spiritual” (WHO, 2014).The “biopsychosociospiritual” framework is used inrelation to the daily experiences of older peoplewith incurable cancer. The term has been appliedboth in palliative care research (Whitford et al.,2008) and in such mental health fields as psychiatry(Josephson & Peteet, 2004). In contexts such as thatin Scandinavia, highly secular though with a Luther-an Christian cultural heritage, there is a clear needto define the category “spirituality” in a way thatcan be suitable for a broad spectrum of existentialmeaning expressions, ranging from traditional religi-osity and personal belief-based spirituality to agnos-tic and atheistic expressions (Josephson & Peteet,2004). A culturally appropriate way of understandingexistential information is to consider it as an appliedframework. Everyone has some way of making mean-ing that goes to the core of what is, for that person,most meaningful and valuable in life. Existentialmeaning-making is therefore how we have definedand operationalized the term “spirituality” in thisstudy (DeMarinis et al., 2011; Ulland & DeMarinis,2014).

There is a gap between the already high and in-creasing number of older people receiving palliativecare in specialized healthcare contexts and the limit-ed amount of research on their daily experiences.This is the case in general and in particular in Nor-way. The aim of our study has been to contribute toaddressing this gap through describing how olderpeople with incurable cancer experience daily livingwhile receiving palliative care in specialized health-care contexts in southeastern Norway.

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METHOD

A phenomenological method called “systematic textcondensation” was employed as an analytical strat-egy for identification of themes from the interviews(Malterud, 2012). The method is based on Giorgi’s de-scriptive phenomenology, modified for qualitativemedical research in Norway (Giorgi, 1985; 2009).

Location

Our study was conducted at the second level of thehealthcare system (specialized healthcare) in twocounties in southeastern Norway. The recruitmentsites had a broad understanding of the term “pallia-tive phase,” which is in line with the latest WHO pub-lication on palliative care for older people (Hall, 2011)and the Norwegian guidelines for palliative care(Norwegian Directorate of Health, 2013).

Participants

The recruitment sites included two oncological dayclinics, two palliative care teams, a radiotherapyunit, and a medical unit with eight cancer beds.The palliative care teams were situated in each hos-pital. The inclusion criteria were as follows: olderpeople aged 70þ including all cancer types; diagnosedwith cancer in the palliative phase; being informedand having an understanding of the diagnosis; livingat home; and not having reached the terminal phase.The medical team at recruitment sites were responsi-ble for assessing whether the patients were cogni-tively and emotionally suitable for beinginterviewed. If cognitive functioning was question-able, the patients were not included. As far as possi-ble, equal gender representation as well as somedistribution regarding age and place of residencewere preferred in order to obtain a range of partici-pants.

Data-Gathering Process

The sample data were gathered between Novemberof 2011 and June of 2012. In order to ensure a highdegree of freely given consent, the initial parts ofthe study’s information, both oral and written,were conveyed by the healthcare professionals atthe respective clinical sites. The final sampleincluded 19 outpatients from the oncological dayclinics, and 2 inpatients from the medical unitwho were temporarily hospitalized while receivingradiotherapy, due to concerns about distance fromhome. This number was approximately one thirdof invited patients. The two main reasons forabstaining from participation were poor healthand low energy level. Four participants withdrewafter inclusion because of a sudden worsening of

their condition. Participants decided the settingfor the interview: 14 at home, 6 in the hospital,and 1 on temporary stay in a nursing home.

The semistructured interview guide covered par-ticipant reflections on four time periods: life beforeillness; becoming sick; life at present; and futureaspects. These were presented through openly statedhow and what questions, for example: “How did youexperience getting sick from cancer?” Each themehad subquestions with a broad range of issues fordeeper exploration. In this connection, the guidefunctioned as a checklist. The specific issues coveredwere: comorbidity, experiences with palliative care,bodily reactions and changes, relational aspects, ba-sic life attitudes, core experiences, and existentialmeaning-making. Three questions were asked in re-lation to existential meaning-making: “What ismost important in your life/gives meaning rightnow?” “What was most important/gave meaning be-fore you became sick?” “What do you associate withthe concepts ‘existential’ and ‘spiritual’?” The guidewas developed after a fieldwork period at the recruit-ment sites, focusing on patients’ experiences, relatedto palliative care and their life situation, and health-care professionals’ experiences with this patientgroup.

Two researchers took part in the interviews. Theprimary researcher was responsible for conductingthe interviews, while the second researcher, a skilledinterviewer, took field notes and commented if some-thing was overlooked. The interview approach wasmainly inductive, aimed at revealing participants’experiences from his/her point of view. Listeningcarefully and allowing participants’ reflections tolead the way through the semistructured interviewguide were paramount. Interviews were recorded,lasting from 20 minutes to 1.5 hours, and transcribedverbatim by the primary researcher. Additional dataincluding interview notes and reflections were alsogathered.

Data Analysis

The authors collaborated on the phenomenologicalanalysis. The strategy called “systematic text conden-sation” comprised four steps: getting a total impres-sion of the field notes and transcripts, identifyingcontent categories, condensing meaning from the cat-egories, and synthesizing the meaning units into de-scriptions and concepts (Malterud, 2012). Duringthis analysis, a summary from each of the four stepswas discussed. The coding process continued until ahigh level of interrater agreement was reached. Thequalitative data analysis program QSR NVivo (v.10) was utilized.

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Ethics

Our study was approved by the regional ethical com-mittee for medical and health research ethics insoutheastern Norway (reference no. 2011/920) andThe Privacy Protection Department at Oslo Univer-sity Hospital. Recruitment sites were responsiblefor follow-up on any participants who experiencedpsychological aftereffects of being interviewed.None of our participants indicated a need for suchhelp. Written consent was obtained prior to theinterviews.

Demographic Information

The information in Table 1 provides an overview ofthe 21 participants in our study (12 men and 9 wom-en). Participants represented a range of ages, thoughthe majority were between 70 and 75. There was abroad range of primary cancer sites as well as of indi-cated time for living with incurable cancer, rangingfrom 5 months to 14 years (at the time of the inter-view). Some 13 of 21 participants reported primarilysomatic-related comorbidities, 6 of whom reportedtwo or more additional illnesses. The majority (18)were in a partnered relationship. The existentialmeaning expressions (spiritual component) in thegroup ranged from having a Christian frame of refer-ence to an atheistic frame.

RESULTS

The results are illustrated in the thematic map de-picted in Figure 1, containing the overarching biopsy-chosociospiritual perspective, grouped under onemaster theme and four subthemes. As we applied aphenomenological approach, we attempted to de-scribe participants’ experiences of living with incur-able cancer from their point of view (Malterud, 2012).

Master Theme: The Strong Link to Life in thePresent

Some 15 of the 21 participants experienced a discern-ible worsening in his/her health condition during thelast year. For the rest, the health condition had beenmore stable. In particular, there were noticeablechanges in terms of reduced energy and initiativefor doing outdoor activities. Consequently, their focushad been increasingly directed toward functioning athome. Nevertheless, the most prominent feature inthe material for almost all participants (19) was astrong link to life in the present. This was found incertain phrases about attitudes to life. One exampleof such a phrase is “I have not sat down yet” (man,74), referring to the opposite position to that of pas-sivity and giving up on life. This attitude was also ex-pressed as satisfaction with life, awareness ofexisting possibilities, and hope for the future. A cou-ple (2) differed from the rest by expressing major dif-ficulties in relating to life at present and a wish to goback in time. The opposite position to feeling quitewell was also expressed by a few.

In general, participants expressed satisfactionwith specialized healthcare contexts. They felt prior-itized and trusted that they were receiving the bestavailable treatment. The hope for life-prolonging ef-fects was the most central motivation for enduring in-tensive and demanding treatment periods. On thenegative side, a lack of information was the most

Table 1. Demographic data (N ¼ 21)

Characteristic/Category n

GenderMen 12Women 9

AgeMean 76 years70–75 1276–78 583–88 4

SocialPartner 18Children 20Grandchildren 17Widow/er 2

Primary cancer siteColon 5Prostate 4Female breast 3Lung 3Lymph/blood 3Urinary tract 2Skin 1

Time living with incurable cancer diagnosis5–6 months 31–2 years 23–4 years 75–7 years 510–14 years 4

Medical treatmentChemotherapy 14Radiotherapy 2Hormone 5Bisphosphonate 3Immunoglobulin 1

Self-reported comorbidityMusculoskeletal 6Impaired hearing 5Heart 4Lung 3Psychological 2Various chronic illnesses 6

Existential meaning-makingAtheist/humanist frame 6Religious frame 11Belief without religious frame 3Unknown 1

Older people with incurable cancer 1041

dominant theme. It was related to experiences suchas not getting proper information and meeting differ-ent doctors every time. In addition, several experi-enced how the results of examinations had beenmisplaced and had to be requested again. For some,this had delayed scheduled treatment.

Subtheme 1: To Acknowledge the Need forClose Relationships

Close relationships—especially to partner, children,grandchildren, and friends—were emphasized. Forsome, great-grandchildren were important as well.Experiences in daily life and activities with otherswere strong patterns throughout the reflections. Aword frequency query in NVivo showed that close re-lationships had the highest rate of themes in the ma-terial. As Table 1 shows, the social factor was veryimportant. Some 18 were still living with their part-ner, while only one was without children, and 17talked about their grandchildren. Some 13 partici-pants rated this subtheme as the most valuable andimportant aspect of their lives, both at present andlooking back: “What gives meaning in my life is ap-

preciation, love, compassion, whatever you may callit, whether it is in relation to my partner, friends,or grandchildren” (man, 88). Other terms to describethis significance were “trust, strength to live on, sup-port, the very best in my life.”

The intergenerational perspective was a promi-nent factor. This included the importance of spendingtime with children, grandchildren, and relatives, anda future engagement in knowing what was happen-ing to them over time. This last aspect was men-tioned as something difficult to handle: “My familyhas always been most important to me. The factthat I won’t be able to follow and support my grand-children is really sad” (man 72).

Three clearly referred to loneliness, relating toloss of peers or to psychological problems stemmingfrom childhood. Some remarked that their partnerand children struggled more in dealing with their ill-ness than they did themselves. Almost half (9) had asick partner. A common feature for these was an em-phasis on mutual support and assistance. One tookcare of a sick partner on a daily basis.

The contact with specialized healthcare was cen-tral in several ways. The importance of receiving

Fig. 1. Thematic map illustratingthe overarching perspective, mastertheme, and four subthemes.

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detailed information and meeting the same doctorevery time was emphasized. Similarly, the impor-tance of a positive and friendly attitude among thestaff was recognized: “It helps me. I get in a merrygood mood” (man, 82). Several described the nursesas always running yet still taking good care ofthem. For some, a healthcare professional represent-ed a significant relationship: “What has been mostimportant after I got lung cancer is that my doctorhasn’t given up on me yet. Hence, I still have hopefor the future. In addition, she makes me feel safewhen I can talk with her about small things” (wom-an, 83). In the opposite case, some (5) reported nega-tive experiences with healthcare providers. Thismainly concerned unfriendly attitudes.

Subtheme 2: To Maintain Activities of aNormal Daily Life

The attempt to maintain a normal daily life relatedespecially to three areas: functioning at home, spend-ing time on close relationships, and being involved incertain meaningful activities. To function at homewas essential for all participants, and for some itwas considered the most important part of their lives.Two typical citations were:

The most important aspect in my life is to live asnormal a life as possible. I learned this in a crisismany years ago. It functioned then, and it func-tions now. (man, 74)

The main thing [about being] sick is to live as Iused to, to be physically active and to be with fam-ily and friends. (woman, 71)

To continue with the things they used to do beforewas a recurring theme, such as housework, physicalactivity, and hobbies. Some (5) were involved in suchvolunteer work as aid, social, and political work. Allthese types of activities were talked about as mean-ingful. Several had reduced or ended their engage-ments due to health constraints, while stillconsidering the experiences as good and meaningful.As can be seen from Table 1, 14 participants were un-dergoing chemotherapy when they were interviewed.These participants did not differ from the others intheir emphasis on living as normal a life as possible.Despite the treatment’s side effects (e.g., poor appe-tite, weakness, and fractures), they were still con-cerned about the meaningful activities of daily life:“Earlier this winter, I needed help with everythingbecause of a fracture in my back. The pain experienc-es in this period have been more troublesome thanthe cancer illness and treatment periods. Now I ap-preciate being self-sufficient, doing many of the

things I used to do in the house and in the garden”(woman, 72).

Subtheme 3: To Provide Space for theSpiritual Dimension: ExistentialMeaning-Making

The area of existential meaning-making was linkedto a multitude of experiences: relational experiences,meaningful activities in daily life, health-related con-straints, core experiences from life history, and, basiclife attitudes. Having close relationships was themost valuable and important aspect in life for 13 par-ticipants. This was followed by certain expressionsabout belief and the aspect of meaningful activitiesin normal daily life. The area of belief was for the ma-jority mainly in line with the content and process ofmeaning-making prior to the cancer. As can be seenfrom Table 1, three belief frames were identified:atheistic/humanistic, religious, and belief without areligious frame. The atheistic/humanistic beliefframe was expressed in different ways. Some statedit clearly with critical statements about religion, bas-ing their view on science or humanism. Others em-phasized that humanistic values were in theforeground, such as relations and altruistic activi-ties. A common feature was that they disapprovedof religion. The religious frame was related to Chris-tianity. The content was diverse, from viewing it asentirely private to wanting to share faith with others.Another variation was that of either regular engage-ment in a charismatic movement or attending a localchurch solely on special occasions such as weddingsand funerals. Belief without a religious frame of ref-erence also varied in its content, meaning New Age–inspired spirituality (woman, 73), “a special feeling ofbeing taken care of” (woman, 76), and as “a kind offaith, but not on a deep level” (man, 70).

The participants (5) who were engaged in volun-teer work were represented in all three types of exis-tential meaning-making frames. Two examples ofsuch involvement were typical: “I will soon write anewspaper article in order to shed light on a socialproblem in my community” (man, 75); and “I am in-volved in an aid project in India. Although I probablywon’t see it completed, I still feel very inspired andengaged” (woman, 73). The participants referred tovarious motivations for this type of engagement: toprevent health decline, to be active and engaged forits own sake, to help others in need, and, to receivea reward in the afterlife.

Subtheme 4: To Name and Handle Declineand Loss

Participants shared comprehensive narratives relat-ed to the process of decline and loss. Most of them (16)

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had lived with cancer for more than three years, im-plying that they had gone through several stressfultreatment periods. The theme “enduring tough treat-ment periods in order to have life-prolonging effect”ran as a common thread through the narratives.One described the process in detail:

I become easily irritated if I have to concentratehard on listening to others or when reading. Thebrain is working with the devilry all the time, sothe illness is always in the back of my head. There-fore, and I have thought a lot about this, I havecome to the conclusion that I need a certain capac-ity for dealing with the illness. This is why I be-come irritated so easily, and in this way I havechanged. (man, 74)

One woman (83) stated a similar but even more ab-sorbing experience: “The cancer illness requires allof me.” Another described a quite opposite experi-ence: “Don’t talk to me about being sick. I just feelfine, and the side effects of chemotherapy are almostnot bothering me at all” (man, 73).

For the majority (16), previous life experienceswere seen as helpful for handling these adversities.To describe this in more detail was seen as difficult,and a typical statement was: “It is hard to say how.I just know that my life experiences help me now”(man, 83). Some had clear expressions: “I lost my fa-ther to cancer when I was a young adult. This hadbeen my worst experience in life. However, the equa-nimity I have now is surely inherited from him”(man, 72). “I have always been very close to my par-ents. Although they are dead, I still believe they arelooking after me” (woman, 76). “The positive side ofhaving lived in a difficult marriage for many yearsis that I believe I’ll manage the future problems”(woman, 73).

For some (3), present difficulties put their ownproblems less in focus: “My daughter has been reallysick. Although it hasn’t been life threatening, thishas been even worse to me than my own illness”(man 74). “My wife is also sick, and that helps meto pay less attention to my own situation” (man, 72).

The most difficult theme was how to relate to thefuture and to death. Some 11 of the 21 participantsstated that they did not think about the future. Theimportance of taking one day at a time and not mak-ing future plans too far ahead were stated as ways ofhandling the situation. Some (4) expressed that theywere afraid of becoming a burden to others: “I don’twant anyone to feel that they have to take care ofme, so I hope my last period will be short” (woman,71).

Experiences of losses and/or difficulties were ex-pressed by all participants, but they varied in scope

and content. More than half (12) had dramatic life ex-periences such as childhood traumas and/or abruptloss of close relations. Concerning bodily reactions,a low energy level and tiredness were the most re-ported symptoms. As shown in Table 1, many partic-ipants received chemotherapy and several hadcomorbid conditions. The reported side effects of che-motherapy varied from almost none to multiple andmajor and complex. For some (5), such sequelae ofthe cancer as stoma, fractures, and infection periodswith hospitalization had been most troublesome. Thecomplexity of symptoms was also prominent, withmany finding it difficult to decide whether these orig-inated in the cancer, in comorbid conditions, or due tothe biological process of aging. Some (4) saw the pro-cess of decline and loss as natural because of theiradvanced age.

DISCUSSION

The main finding demonstrates that older people hadboth a wish and an ability to continue with life-ori-ented daily living. No participants expressed a desirefor a hastened death. In fact, their main focus was onliving as long and as well as possible in the midst ofconstraints. On this basis, our study showed that ex-istential meaning-making and resilience were theoverarching processes for these older people. Thougha central subtheme in itself, existential meaning-making ran as a thread through all the subthemes,representing through very different expressions thecentrality of belief frames and the core of what ismost meaningful and valuable in life. Existentialmeaning content was characterized by continuation,being in line with what they considered as mostmeaningful and valuable before the time of the can-cer diagnosis.

We also found that older people’s responses to ad-versities while aging fit well with the conceptualframework “resilience repertoire” from gerontologyresearch (Clark et al., 2011). There are three mainreasons for this. First, the framework includes a dy-namic and comprehensive understanding of resil-ience. This view is supported by palliative careresearch with older patients (Nakashima & Canda,2005; Pentz, 2008). The relevance of this understand-ing is especially seen in relation to the complex dy-namic between contextual factors, such asspecialized healthcare contexts and older people,over time. For the older people in our study, special-ized healthcare strengthened their link to life by pri-oritizing and providing person-centered palliativecare. Having a healthcare system that is cost-freeand available for all is of major importance in thisconnection. Second, the framework correspondswith the diversity of psychosocial and sociocultural

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resources among the participants on an individuallevel. On the basis of the biopsychosociospiritual per-spective, this diversity was found in all four sub-themes. By applying this perspective, the variety ofresources was revealed. Third, the subthemes reflectand amplify the factors that go into the “resiliencerepertoire”: chronic and incurable illness, experienc-es from life history, and meanings in life (Clark et al.,2011).

The first factor of chronic illness in our study in-cluded adjoining problems such as comorbid condi-tions, changes due to the aging process, variouslosses, crises, and dramatic life experiences. Thecomplexity that emerged in our sample is well knownin the literature (Allen et al., 2011). The main themefor participants was “to endure tough treatment peri-ods in order to have a life-prolonging effect.” At thesame time, the level of experienced difficulty varied:from viewing themselves as quite healthy to experi-encing the illness as requiring every available re-source.

This first factor was related to the oscillatorymovement experiences, also characterized by varia-tion. In palliative care research, this type of move-ment is reported to be frequently present in manypatients. The content is described as experiencedstruggles in relation to the existential (Benzeinet al., 2001; Sand et al., 2009), physical (Lindqvistet al., 2006), psychological (Maher & de Vries, 2011;McTiernan & O’Connell, 2014), and social domains(Andersson et al., 2008). On the basis of the biopsy-chosociospiritual perspective in our study and thevariation in the sample, this oscillatory movementwas found in relation to all the referred domains.The struggles for participants involved every aspectand domain of life. This finding is supported by Sæte-ren and colleagues (2010). Despite the experiencedknowledge of their incurable disease, participantswere still hoping for a life-prolonging effect fromtreatment. Having this as a main point of departure,hope might have functioned as a central part of theresilience process by strengthening the connectionbetween noticeable experiences of health declineand a life-oriented attitude. The significance ofhope has been emphasized in several studies in palli-ative care research (Benzein et al., 2001; Devik et al.,2013; Maher & de Vries, 2011; Sæteren et al., 2010).However, it has not been related to the resilience pro-cess in these studies.

The second factor that influences the “resiliencerepertoire” is that of experiences from life history. Acommon feature among participants was that previ-ous life experiences were seen as helpful for handlingcurrent adversities, though it was seen as difficult todescribe in detail. In gerontology research, there is agrowing interest in this field (Baltes et al., 2006;

Clark et al., 2011). Clark and colleagues (2011) de-scribe a process where previous life experiences areascribed to the adversities and incorporated in thelifelong development of self-identity in a way that en-ables continuity and constancy across the lifespan.Thus, by developing personal narratives in thisway, they become resources in dealing with declineand loss. This aspect of continuation was found inall four subthemes in our study. Despite that, theskills and resources in the “resilience repertoire”were limited for most participants, and continuityseemed to be actively selected and prioritized. By or-ganizing the skills and resources in relation tothemes and values from one’s life story, the very per-sonal way of dealing with the incurable illness couldbe realized. The same pattern is found in similarstudies on younger patients with incurable cancer(McTiernan & O’Connell, 2014; Sand et al., 2009).

Meaning in life is the third factor influencing the“resilience repertoire.” Research has shown thatmeaning in close relationships, spirituality, and ac-tivities are key factors related to health and resil-ience (Clark et al., 2011). These key areascorrespond with the current study’s subthemes ofclose relationships, activities in normal daily life,and existential meaning-making. These areas wereat the core of what is most meaningful and valuablein life, thus helping older people deal with declineand loss and protect them from some of the difficul-ties of aging. The theme of close relationships wasthe most dominant, and especially to be togetherwith a partner, children, or grandchildren. “Relation-ships” is also a common theme in palliative care re-search on patients’ experiences (see, e.g., Benzeinet al., 2001; Sand et al., 2009; Sæteren et al., 2010).Devik and colleagues (2013) emphasize the samepoint by showing the consequence of an absence of re-lationships: loneliness causes suffering in older peo-ple living alone in rural areas in Norway.

The significance of activities in normal daily lifehas been emphasized in the research, (Sviden et al.,2010), and also related to continuity in the life storyof patients (McTiernan & O’Connell, 2014). However,existential meaning-making understood as a function-ing frame of reference has been less explored in the lit-erature. In our study, as with others in Scandinavia,these frames covered a broad range, from Christianto atheist (DeMarinis, 2008). Independent of type offrame, they were deeply interwoven with a multitudeof experiences that influenced daily living. The framefunctioned as a source of encouragement, strength,and guidance through difficulties, thus influencinghow participants applied their psychosocial and socio-cultural resources. The frame provided a functionalvalue system, supporting a motivation for takingcare of others or prioritizing certain hobbies such as

Older people with incurable cancer 1045

music and sports. It also inspired engagement in aid,social, or political work across the spectrum of frames.In relation to difficulties such as having concerns forthe future, the frame provided means for understand-ing conceptions and experiences of hope. By gettingcomprehensive access to this type of existential infor-mation from participants, we increased our under-standing of how they adapt to the cancer illness,protect themselves against difficulties, and identifyand utilize their resources.

On an overarching level, our study showed that the“resilience repertoire” in older people is influenced byfactors linked to existential meaning-making. Conse-quently, for our participants resilience and existen-tial meaning-making were interrelated conceptsand processes. This interrelatedness was addressedin one study on resilience in older people in a hospicecontext, also emphasizing that significant relation-ships, the ability to confront mortality, and stabilityin environmental resources are additional resiliencyfactors (Nakashima & Canda, 2005). Other studieshave addressed similar aspects without ascribingthem to resilience. La Cour and colleagues (2005) ad-dressed the interacting relationship between engage-ment in creative activities for older people in nursinghomes and existential meaning-making—for in-stance, by bringing up new thoughts about the futureand death. A corresponding finding emerged in ametastudy on spirituality, concluding that affirma-tive relationships constitute a dominant and integralpart of spirituality (Edwards et al., 2010). Related topalliative care research on patients’ experiences, themain theme and subthemes showed that older peopledo not differ from younger age groups in their experi-ences of being strongly linked to life in the present.These findings are in agreement with similar find-ings around this theme focusing on living (Benzeinet al., 2001; Maher & de Vries, 2011; McTiernan &O’Connell, 2014; Sand et al., 2009; Sæteren et al.,2010).

Due to the increasing proportion of older peopleneeding palliative care in specialized healthcare con-texts, future research should pay more attention tothis age group in general. More specifically, investiga-tion of the complex processes of existential meaning-making and resilience in older people in order to iden-tify and strengthen their own life resources is needed.As cultural contexts and their palliative care systemsdiffer greatly, including a cultural analysis dimensionin research would increase both the accuracy andcomprehensibility of research findings.

METHODOLOGICAL CONSIDERATIONS

There were several conditions that influenced ourresearch process. We assume that the collaboration

with the second researcher reduced the influence ofbias in the initial interpretation. To interview par-ticipants at home was different from interviewingthem in the hospital. In the first case, the inter-viewer was more like a guest, meeting the partici-pant on his/her premises. In the second case, theinterviews were affected by the routines and workat the recruitment sites. Another variation wasthat for one fifth of participants a partner waspresent during the interview. Some partners gavesupplementary comments, which led the dialoguein a certain direction. In qualitative research likethis, there is a risk that participants under-estimate, conceal, and/or ignore problems. Thisrisk could have been reduced if participants hadbeen interviewed twice, and thus allowed to givemore thorough descriptions of problematic issues.However, this type of approach has its own prob-lems. Some participants asked about the number,stating that they would refuse if there were morethan one interview. This was due to the tough andfull treatment schedule. In addition, several of thecontacted patients abstained from participation,mainly because of a poor or worsened health condi-tion. The social factor was high for participants,and with a lower level, the findings would haveshown a different pattern. Although the samplewas recruited from a large geographic region, itwas still limited by the specificities of the socio-cultural and palliative care contexts.

CONCLUSION

Viewing older people as frail and vulnerable is a com-mon and recurring perception, especially in Westernyouth-driven cultures. This perception can also be re-flected in specialized healthcare contexts. However,in our study, older people living with incurable can-cer reported that the specialized healthcare contextsstrengthened their link to life by providing and prior-itizing person-centered care. This is seen as encour-aging information for healthcare professionals. Theknowledge that the potential for resilience remainsdespite aging and serious decline in health conditionis considered a source of comfort for older people liv-ing with incurable cancer. Insights into the processesof existential meaning-making and resilience areseen as useful in order to increase our understandingof how older people adapt to adversity, and how theirresponses may help protect them from some of thedifficulties inherent to aging. Healthcare profession-als can make use of this information in treatmentplanning and in identifying the psychosocial and so-ciocultural resources that can support older peopleand strengthen their life resources.

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ACKNOWLEDGMENTS

This study was funded by the Innlandet Hospital Trust ofNorway, which also assisted with recruitment. Kari Kjøns-berg took part in the interviews. We are grateful to thestudy participants. This research was partially supportedby a grant awarded to the multidisciplinary research pro-gram Impact of Religion: Challenges for Society, Law, andDemocracy, established as a Centre of Excellence at Uppsa-la University and funded by the Swedish Research Council(2008–2018). Dr. Valerie DeMarinis is a member of thisCentre of Excellence.

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