Received: 18 November 2002Accepted: 3 September 2003Published online: 25 October 2003© Springer-Verlag 2003

Abstract Goals: This article seeks tomake a contribution to fostering workon the neglected area of researchabout how individuals maintain apositive outlook during their confron-tation with serious illness. Insightsare presented from both haematologysurvivors and hospice patients aboutthe factors that hinder and facilitatetheir capacity to ‘be positive’. Pa-tients and methods: Open-ended in-terviews with 14 hospice patients and12 haematology survivors on theirconstruction of meaning in the face ofserious illness were audio-recorded,transcribed verbatim and thematicallyanalysed. The findings on the topic ofmaintaining a positive outlook arepresented in this article. Main results:Although the participants affirmedthe value of a positive perspective ontheir illness experience, they werecritical of unwanted pressure fromothers to be positive: a phenomenon

they called the ‘RA RA’ positive.Such pressure interfered with the nat-ural process of continually having tore-negotiate a positive outlookthrough exploring the fullness of feel-ing, both positive and negative. Theparticipants indicated that at times ofrelapse or worsening physical condi-tion they had to cycle through a pro-cess of despair/negativity and re-ad-justment before they were able to findthe positive. The process could not berushed and required freedom from animposed pressure to be positive. Con-clusions: The essential message isthat a positive outlook cannot be im-posed but requires a nurturing orien-tation that allows the expression of afull range of feelings in a supportiveenvironment.

Keywords Positive outlook · Hospice · Survivors · Haematology ·Spirituality

Support Care Cancer (2004) 12:25–33DOI 10.1007/s00520-003-0547-4 O R I G I N A L A RT I C L E

Pam McGrath The burden of the ‘RA RA’ positive: survivors’ and hospice patients’ reflections on maintaining a positive attitude to serious illness

Introduction

Background

Although the importance of maintaining a positive out-look is widely acknowledged as an essential adjunct tosuccessful treatment outcomes in oncology [28], there isscant research on this notion. A literature search on posi-tivity in the health care literature is most likely to yieldarticles on HIV seropositivity or positive T lymphocytesrather than psycho-social insights on the process bywhich cancer patients maintain a positive orientation to-wards their life and treatment.

This article seeks to make a contribution to fosteringwork on the topic by presenting insights from both hae-matology survivors and hospice patients about the factorsthat hinder and facilitate their capacity to ‘be positive’.The unifying theme across all of the findings is the dam-age caused by an artificial pressure on patients to be posi-tive and the need to allow a positive orientation to evolvenaturally through a process that acknowledges despair.The findings are from a qualitative study that examinedthe ways individuals construct meaning in their liveswhen faced with the challenge of serious illness.

In the literature, the closest phenomenon related tothe notion of being positive is that of hope. While it is

P. McGrath (✉)Centre for Social Science Research,Central Queensland University,4702 Rockhampton, Queensland, Australiae-mail: pam_mcgrath@bigpond.comTel.: +61-7-33741792

acknowledged that at present there is no agreed defini-tion for hope, and that this elusive notion can refer to amultiplicity of states [6] that do not consistently corre-spond to a positive orientation, the literature on hope isseen as relevant and will be used to inform the discus-sion. However, a clear distinction is made between thenotion of being positive, simply defined as a way of talk-ing and acting that reflects an optimistic or positive atti-tude or feeling state, and the multifaceted notion of hope.A positive orientation is understood as but one dimen-sion of the complex hope taxonomy. Hope also includesideas of inner motivation, a sense of inner peace, an af-firmation of self-worth, connectedness, acceptance, aninner power, expectations, illusions, virtues, emotionsand goals, which are described as both a curse and ablessing [4, 9, 12, 13, 23, 29, 32].

Research

The research project represents the first time substantialfunds have been provided by a major Australian cancerresearch organisation for work on spirituality. Althoughthere is not, as yet, an agreed definition in the literature[21], preliminary definitions indicate that spirituality isbroader than religion and relates to the universal quest tomake sense out of existence [2, 7, 1, 14, 22]: a character-istic of human ‘being’ [10, 27]. As Hodder and Turley[15] explain: “Spirituality describes the organising centreof people’s lives, it is that which brings coherence orunity to the diverse elements of their experience, provid-ing them with meaning and purpose, enabling them totranscend present dilemmas and more creatively into thefuture”.

Patients and methods

As the full rationale for this study is published elsewhere [16, 17,18, 19, 20], it will suffice to indicate that the starting point is toexamine how individuals construct their ‘meaning-making’ in re-sponse to a serious illness. The data on the phenomenon of beingpositive is one outcome of an examination of this broader notion.The study, funded by the Queensland Cancer Fund for 2 years, fo-cused on the construction of meaning for hospice patients (arm A)and their carers (arm B), and the health professionals who look af-ter them (arm C), as well as cancer survivors (arm D) and patientsundergoing curative care in a hospital setting (arm E). The find-ings reported in this paper are presented from the arms of the re-search that explored aspects of spirituality in relation to hospicepatients and survivors. The choice of data presentation on the top-ic from these two cohorts keeps the focus on the patients’ experi-ence, as distinct from the very different perspective of the carers.

The Central Queensland University Ethics Committee ap-proved the study. Participants were informed of their ethical rights(such as informed consent, confidentiality, right to withdraw) be-fore agreeing to participate, and written consent was obtained pri-or to the interview.

Participants—hospice patients (arm A)

Participants in this arm were consecutively enrolled through theKaruna Hospice Service. Prospective participants were contacted,told of the study and invited to participate in an interview. All par-ticipants met the criteria for the community-based hospice in thatthey had a terminal diagnosis with less than 6 months to live, hada general practitioner involved in their care and a carer who wasable to look after them in their home environment. All resided inthe suburban area on the north side of Brisbane, the geographicaldistrict serviced by the hospice. All were Anglo Australians, andwith the exception of one (English), all had Australian citizenship.The majority (n=8) indicated no specific religion on the admissionsheet. Five nominated a religion (Church of England n=1,Anglican n=2, Uniting Church non-practicing n=1, Catholic n=1),and one recorded Theosophy. Further demographic details on gen-der, age, diagnostic grouping, family situation are outlined in Table 1.

Participants—survivors (arm D)

The participants in this arm of the study were enrolled through thesupport worker at the Leukaemia Foundation of Queensland(LFQ). There was no screening of the participants, who were allconsecutively enrolled from an alphabetical list of members of thesurvivors’ group run by LFQ. Prospective participants were con-tacted, told of the study and invited to participate in an interview.All those contacted agreed to participate (n=12). This group ofhaematology survivors experienced a potential confrontation withdeath both at the point of diagnosis of their life-threatening condi-tion and subsequently during their risky high-tech treatments. Formost participants, it had been from 3 to 8 years since they hadbeen diagnosed (3 years n=1, 4 years n=1, 5 years n=3, 7 yearsn=3, 8 years n=2, 12 years n=1, 15 years n=1). The majority un-derwent at least one bone marrow transplantation (n=8), and allexperienced extensive chemotherapy and radiotherapy. More thanhalf were 5 years or more post-treatment (1 year n=1, 3 years n=2,4 years n=2, 5 years n=3, 6 years n=2, 9 years n=1, 10 years n=1),an important point in time that signals cure in oncology terms. The

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Table 1 Demographics

Hospice patients (n=14) Survivors (n=12)

Male n=4 Male n=8Female n=10 Female n=4

Age Age40–49 n=1 25–29 n=350–59 n=4 30–39 n=260–69 n=3 40–49 n=370–79 n=4 50–59 n=380–89 n=1 60 n=190–99 n=1

Diagnostic group Diagnostic groupBreast cancer n=4 Chr myeloblastic leukemia n=5Bowel cancer n=3 Acute lymphoblastic leukemia n=2Lung cancer n=3 Acute myeloblastic leukemia n=2Prostate cancer n=1 Multiple myeloma n=1Ovarian cancer n=1 Non-Hodgkin’s lymphoma n=1

Ewing’s sarcoma n=1

Married n=8 Married n=10Widowed n=4 Never married n=3Divorced n=1Never married n=1

majority (n=9) resided in a suburban area of Brisbane, with therest (n=3) in regional Queensland towns. All were Anglo Austra-lians. All but one, who was exploring Christianity, indicated thatthey did not have an active religious affiliation. Further demo-graphic details on gender, age, diagnostic grouping, family situa-tion are outlined in Table 1.

Methodology

The meaning patients are making from their illness experience hasbeen documented through qualitative research using an open-end-ed interview with each participant. The interviews were conductedby a psychosocial researcher with a counselling background, expe-rience in conducting and publishing in spirituality research andmany years’ experience working with families coping with amember with serious illness. The time and location of the inter-views were of the participants’ choosing and were all conducted inthe participants’ home. They were encouraged to tell their storyfrom the point of pre-diagnostic symptomatology up to the presentwith the opening prompt questions: “Could you tell me of your ex-perience, in your own words and in your own way, from the timeyou became aware that you were ill? I am interested to hear abouthow that has changed how you see the world and what you believeis important”,

The interviews were audio-recorded and transcribed verbatim.The language texts were then entered into the QSR NUD*IST N5software for qualitative analysis computer program and analysedthematically. A phenomenological approach was taken to the re-cording and data analysis.

Results

Both the survivors and the hospice patients, while af-firming the need to remain positive, made clear state-ments about the problems associated with the phenome-non they call the ‘RA RA’ positive. For clarity of presen-tation, in the following discussion, hospice patients’comments will be designated with (HP) and survivorswill be identified by (S).

Defining the ‘RA RA’ positive

As can be seen by the following statements, the key in-gredient in the ‘RA RA’ positive is the imposition of thepressure to be positive. This pressure was perceived bypatients to be arbitrarily imposed by others who do notunderstand the complexity of feeling states or psycho-logical processes associated with maintaining a positiveperspective during the challenge of serious illness. Asone hospice patient explained:

– (HP) It is not positive. It is not. If people would bemore realistic then you would be better because noth-ing is going to change, it is not going to cure it, noth-ing is going to, you know, it is a downward spiral. . . .And then to have somebody saying. Oh Ra Ra Ra Ra!I just think, I don’t need to do that, so leave me aloneor else listen to me but don’t sort of push the positivebit. Yes.

Similarly, the survivors indicated that the unwelcome as-pect of the ‘RA RA’ positive was the artificial pressureto be positive when the patient is not really in the spaceto experience or communicate a positive outlook. As onesurvivor explained:

– (S) I have seen some books and some things that peo-ple have said and it is almost like, I’m hanging on tothis positiveness even though I don’t really believe it.. . . And that I call ‘RA RA positiveness’. . . . I neverfelt that need to grab desperately onto being positive.You know, the ‘chin up’ and all that sort of thing. . . .Oh, you have got to be positive. But I . . . it was al-most like I said, look this is my experience and Idon’t care what you say. Just allow it to come.

Being positive is a process

Both the hospice patients and the survivors spoke in de-tail about the ongoing process associated with maintain-ing a positive outlook. As can be seen by the followingstatements, positiveness is not a given but rather a pro-cess that needs to be continuously negotiated dependingon the changing situation of the patient. This is particu-larly difficult at times of worsening of the disease. Onehospice patient spoke in detail of the ‘downward spiral’and the need to negotiate at each point:

– (HP) I know it is a downward spiral and when I cometo each section I get really upset because I think wellnow it is not going to climb any further up that way.And I find that . . . yes, I’ve just got to work withthat.

Similarly, a survivor talked of the confrontation with arelapse and the time it takes to deal with the issues:

– (S) With the second diagnosis—the relapse . . . it tookabout 3 weeks to sort of roll with it, roll with the fact,you know, death and dying and all those issues andthere’s less chance of surviving again. I knew that Ijust had to roll with it and allow it to happen.

Thus, for both hospice patients and survivors, maintain-ing a positive attitude involved a process of continual ad-justment or adaptation over time. The important pointwas that the process could not be forced but rather need-ed to unfold over time. It was noted that individualsgained confidence in their ability to face difficult situa-tions if they were able to engage, at their own pace, inthe gradual process that moves from despair to finding apositive. The significance of the freedom from the pres-sure to be positive, and the confidence that results fromprior experience in gradually adjusting to the despair, isclearly stated in the following text:

– (S) I think because I’d had first transplant there weremoments and I knew that you don’t hold everything

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forever. And I think that probably allowed me thefreedom to discard the ‘RA RA’ positive and just gowith it and find the positive. . . . I’d found the firsttime. So that allowed me, I guess, not to be afraid.

Experiencing the many and varied feelings associatedwith the worsening condition was seen as an essential as-pect of the process of finding a positive perspective.Consequently, the process included experiencing, ratherthan avoiding, the negative emotions. There was a sensein which ‘digesting’ or experiencing the full range offeelings provides the foundation for building a realistic,rather than forced, positive approach. Participants indi-cated that it is important to face, rather than feel fright-ened of, the negative emotions. As the following state-ment reveals, too much pressure to be positive inhibitsthis process:

– (S) (So you would say just have the feelings anddon’t get scared about them?) Oh, I think so. . . . Thatis part of the process and I guess you can’t reallyforce the positives. You can’t force the positive reali-sations on yourself. I have always felt uncomfortableabout the ‘RA RA’ confident. I have always felt . . .you know, people go, Oh you’ve got to be positive!Well I want to be negative for a while. You know, abit of digestion. Allow them to digest it all and allowthem to be upset about it. . . . allow yourself to feelunlucky.

Experiencing the negative emotions was not only seen asa way of integrating all aspects of the experience but, tosome degree, of letting go of the negative:

– (S) You must have your down days and you can’t al-ways be happy. I mean if you don’t have your downdays you don’t realise when your good days are. Andyou can’t get rid of your horrible emotions. I mean Ithink you have your bad days for a reason and that isto get rid of your horrible emotions.

– (S) I had my negative and then I had my transplant. Itwas needed. I would have crashed and burned other-wise—probably in the transplant time.

– (S) Oh yes, I still have my down days. Touch wood Ihaven’t had one for a while. But my wife knows whenI am having a down day. You still go to work and stillfunction, but you’re just not happy, you are just notyourself.

As the following participant summed up, the down daysare important:

– (HP) Yeah, so I think that is one of my things I’d sortof like to say to people, you know, people can onlyhandle so much of being happy and they’ve also gotto have their bad days as well.

Participants referred to too much pressure to be positiveas ‘the burden of pressure’ or ‘the burden of being posi-

tive’. They spoke at length about their gratitude to thosein their intimate circle who did not pressure them andwho allowed them to be ‘real’ about what they were feel-ing. Equally, the participants spoke with anger and dis-tress about those who imposed the pressure to be posi-tive:

– (S) My sister, this is running up to the second trans-plant, I’d relapsed and my sister said, Oh chin up!And I was going . . . Oh, it is the last thing I want tohear right now!

The pressure can force a defensive response:

– (S) I used to get really defensive with people sayingto me, Ah you’ve got to keep positive, you’ve got tokeep positive, you’ve got to do this you have got todo that. And you feel like saying to them, I can’t bepositive for 100% of the time.

One hospice patient explained the pressure to be positivedoes not make a person feel any different; it only makesthem put on a brave show for others:

– (HP) But it was hard. And it was depressing. And itwas sort of put on a bright thing for everybody but in-side I would be . . .

Factors facilitating a positive outlook

Both hospice patients and survivors indicated that paral-leling the need to have the fullness of feeling were anumber of factors that could independently assist the in-dividual to be positive:

Intuition

A significant factor was the intuitive sense that thingswould work out. This intuitive optimism could be seenin the statements of both survivors and hospice pa-tients:

– (S) At no stage throughout the entire 12 months treat-ment I didn’t think I was going to die . . . That wasjust me. I just knew it was going to be all right.

– (HP) I don’t feel like dying anyway (laughs).

As there were so many examples in the survivor data ofsuch confident/positive intuitive statements about the ex-pected outcomes of treatment, the findings indicate theneed for further work on the significance or reliability ofcancer patients’ intuitive feelings. The present datawould indicate that it is important to listen to the pa-tient’s intuitive sense about expected outcome.

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Inner strengths

Many participants made reference to inherent strengthsin their personality that facilitated a positive outlook onlife:

– (S) It is not forced and I do by nature probably find,just naturally find, positives.

In the face of serious illness, the important personalitystrengths had to do with strong will and determination:

– (HP) I’ve always been a fighter.

Some participants pointed to significant factors in theirhistory that strengthened such personal qualities, such asa difficult childhood or army training:

– (HP) [Being previously in the army] sort of gives youthe feeling of being more self-reliant about things.And probably being more positive.

– (S) (Talking of difficult childhood) What they did tome only made me stronger.

Support and connection

As published elsewhere [16, 18], support from others inthe intimate circle and a strong connection with the ‘hereand now’ are essential factors for maintaining a positiveoutlook.

Information seeking

Information is a double-edged sword, but where the in-formation suggests positive outcomes, it can form a basisfor a positive orientation:

– (S) I found some information that allowed me to bepositive I guess. . . . Information allowed me to beconfident. Because I am analytical, I needed to basemy positiveness in fact.

Others not dwelling on the negatives

A distinction was made between allowing the individualto have the fullness of their feelings and imposing a neg-ative. Whilst participants did not want to be pressured tofeel positive, they did express an appreciation for carerswho were positive around them and who were able to seepositives in their situation. Indeed, participants indicatedthat they would avoid people who only wanted to look atthe negatives in the situation:

– (S) Well you can never have enough positive peopleabout you in whatever you do.

Avoiding negativity is difficult because mentioning thevery word ‘cancer’ usually caused a negative reactionthat is difficult to deal with:

– (S) I don’t know if it is so bad now, but you mentioncancer to anybody and Ooooh! (a dramatic reaction?)Yeah. Ooooh! You’re going to die, aren’t you? Butthat is not what you want to hear, or that’s not whatyou want to feel.

Some sought counselling advice as to how to deal withthe negativity. As a consequence, they engaged in a con-scious, albeit difficult, process of trying to avoid peoplewho were unduly negative:

– (S) I once went to a counsellor and she told me to tryreally hard to surround myself with people who mademe feel good and try to avoid the people who werenegative and who left me with a yucky feeling. I triedreally hard to do that, but sometimes that’s difficult.That is a really good thing to do. I thought. Plus itgave me permission.

Again, it is important to note that participants were notsuggesting that individuals around them are always posi-tive, but that there is some positive:- (S) You can’t always be positive . . . but I prefer to be

in that environment.

Time out

Where the individual is able to enter the ‘flow of life’,they appreciate others focusing on the normal activitiesand not exclusively on the illness:

– (S) Um, I’d prefer people . . . when you’re doing wellenough to be able to work and do the sporting club.I’d prefer people not to ask me, how you’re really go-ing? When is your next treatment? etc.

Other activities can be a distraction and provide a posi-tive orientation:

– (S) There were other things that were happening. Mywife (talked about family activity) . . . which wasgood and so we kept very positive as far as that wasconcerned.

Exploring positive ways of thinking

Although participants stated a dislike of the pressure tobe positive, this did not translate into passivity. Therewere clear indications that both hospice patients and sur-vivors were under their own internal pressure to find apositive framework for their illness experience. Indeed,some of the survivors indicated that they were frightenedof the consequences of not finding a positive outlook, asthe failure to do so may lead to death:

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– (S) I would hate to think where I would be if I’dchose that negative path.

One survivor related a story about how finding a positivedid directly translate into avoiding death:

– (S) I remember a doctor saying that if things don’tstart to change, well, we’ve done all we can for you.It is like you are willing yourself to die. And I re-member I did for a few days. But after that I thought,Oh this is too hard! I’ve got to get better. And afterthat I started to come good. Call it coincidence or not,that is what happened.

Positive spiritual and existential frameworks

Similarly, even though hospice patients were acceptingof death, many indicated that they relied on positive cog-nitive strategies of selectively focusing on living to pro-long the life they had left:

– (HP) I don’t want to think of things like that, becauseI’m not going to give in yet, you know. (Yes, so yousay I will push that aside and just focus on the posi-tive?) Yes, Yes, Yes I do.

There were a number of cognitive or spiritual frame-works that participants used to help them develop such apositive orientation. For example, meditation is helpfulfor some:

– (S) I did a meditation course. I think it was very help-ful. But I thought meditation was good because it en-ables you to let go of things and to be calm and bemore balanced.

Some survivors indicated that they believed in the powerof positive thinking and consciously chose to embrace apositive mental approach:

– (S) (So you really believe in the power of positivethinking?) Strongly! Totally! I believe a lot of that gotme through.

For some, focusing on family provided the positiveframework:

– (HP) I’ve just got to hang in here. I’ve got anothercouple of years that I’ve got to be here for (my grand-children).

Role models

Participants also gave descriptions of role models whoprovided inspiration as to how to be positive:

– (S) Dad also remained very positive . . . he was older,his treatments were much more severe but he alwaysstill had a positive attitude himself.

One participant indicated that watching a loved one giveup was a role model of what to avoid:

– (S) I saw what happened when he gave up fightingthe disease. He just gave up. . . . So I thought youbugger you are not going to do it to me.

Confidence in medical care

The survivors indicated that an essential factor in main-taining a positive outlook is the trust and confidence theyhave in their health professionals and treatment, both forthe present:

– (S) It is about good doctors, good nurses and medicalscience. And the other part’s about good attitude. Peo-ple say, oh well, you got through cause you had agood attitude. And that’s fair to say, but if you tookaway the medicine and the doctors, I wouldn’t havehad a hope in the world.

and the future:

– (S) Probably my comfort is that my stem cells havebeen harvested. According to my doctor, if the wheelsfall off again they will be able to use those and Ishould get another three years.

Thus, as the following participant summed up, there area myriad of factors combined with quality medical carethat contribute to maintaining a positive outlook:

– (S) I knew what my boundaries were, what my oddswere, and then it is up to me and my body to beat itand my mind and help of the doctors and the sup-ports. So if you have all the support network andyou’re positive in your mind, I think that’s when a lotof it’s saving grace.

Focusing on the cure—hospice patients

Although their prognoses were different, both hospicepatients and survivors indicated that, in order to remainpositive, they would not ‘give up’, and instead put theirenergies into ‘beating’ the disease. For hospice patients,this talk was sometimes juxtaposed with an acceptanceof the closeness of death:

– (HP) Oh, yes, I did think I was dying. Oh, yes, I . . .yes. And then all of a sudden I just thought, stuff thelot of you I’m not going to give up so easily.

Sometimes, it was associated with cure:

– (HP) Well, you’ve got to keep positive haven’t you.There is no use sitting there moping, I don’t think. Ireckon I’m going to get well you know.

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Or sometimes with a specific physical task, such aswalking:

– (HP) I’m coping well. I’m helping myself and myfamily is helping. They want me to walk again. Now,there is a possible chance if I can keep the cancer atbay, I could walk again.

But mostly, it was associated with prolonging the mo-ment of dying:

– (HP) I just need medical help to keep me going a bitmore.

Focusing on the cure—survivors

For survivors, the positive orientation toward cure wascouched in terms of ‘beating’ the disease, with descrip-tives such as ‘not throwing in the towel’, ‘fighting it tothe end’, ‘the challenge’, and ‘going to beat it’. Thesheer determination that underpinned this approach canbe seen by the following statements:

– (S) Even though the chemo knocked me around a hellof a lot, I was down to about 70 kilos, I’m usually 90,so I was a skinny little bastard for a while. I used toalways go walking and falling over every now andthen, and that used to make me more determined tosort of get out there more.

Accepting death—steps and stages

As reported elsewhere [18] the actual physical conditionof the patient is a significant factor impacting both onstress levels and the sense of optimism. For the survi-vors, any signs of physical improvement assisted theirability to be positive:

– (S) There is a big improvement. Although I’d like tobe stronger the progress is quite slow. But it is defi-nitely a massive improvement, so that is good.

However, as can be seen by the following statement, as the condition worsens this strategy is not very effec-tive:

– (HP) I’ll try to beat it, if I don’t beat it, well . . . Then,you know. But that is the way I look at things (cry-ing).

As the survivors achieved such positive outcomes fromtreatment they had more statements about the process ofmaintaining a positive curative orientation. The discus-sion for hospice patients focused on accepting death. Forall hospice patients interviewed, there was both a strongacceptance of death and a willingness to talk about dy-ing. Participants indicated that a positive orientation wasnot necessarily predicated on ‘cure’ but rather could be

achieve through a process of coming to terms with dy-ing.

The process of accepting death was described as astep-by-step process of gradually coming to terms withincreasing physical deterioration. Maintaining a positiveorientation involved a staging process of having the neg-ative feelings about each step in the ‘downward spiral’,accepting the new level of physical limits or distress andreadjusting expectations to match the imposed physicalrestrictions. The process can be seen by the followingsummary statement from a more detailed discussion:

– (HP) (Summarising prior discussion—So you just dealwith the space you are in?) Yes, I try to be as positiveas I can, but knowing in the back of my mind that it isgoing to go down. But I am determined that it’s notgoing to go down as fast as everybody else thinks itmight. (And you will deal with it then?) Yes. (Becauseyou package it and then go onto the next space?) Yes.That is the only way I can deal with it anyway.

The parameters for positive achievements are no longerassociated with work or social life but focus on smallsteps towards physical comfort or progress, as seen bythe following:

– (HP) (Talked about pacing self through a sequencesof steps to get walking.) Try to get movement frommy knee. I can put my foot out on the floor and that iswhat I am trying to do. (So you just doing one step ata time?) Yes.

A natural positive

The end result of the process of allowing a positive ori-entation to unfold naturally, rather than through imposedpressure, was stated to be a genuine sense of the positiverather than a sense of ‘having’ to be positive. As oneparticipant summed up:

– I am not finding a positive, it is Geez! It is a positive!

Discussion

Although the participants affirmed the value of a positiveperspective on their illness experience, they were criticalof unwanted pressure from others to be positive: a phe-nomenon they called the ‘RA RA’ positive. They indicat-ed that such pressure was based on a lack of understand-ing of the natural process associated with maintaining apositive outlook and, at best, could only lead to a some-what artificial ‘brave face’.

As outlined in Fig. 1, participants indicated that attimes of relapse or worsening physical condition theyhad to cycle through a process of despair/negativity andre-adjustment before they were able to find the positive.

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The findings resonate with Olsson et al. [24], who de-scribe feelings of being ‘down in the depths’ as a charac-teristic part of surgery recovery.

Also as outlined in Fig. 1, participants indicated thatthere were a wide range of factors that facilitated theprocess. The dual factors that inhibited the process in-cluded both the pressures to be positive and too muchnegativity from others. The experience of being able toface difficult feelings gave individuals the confidence todeal with future challenges. Confidence in oneself isdocumented elsewhere as an important factor in achiev-ing emotional coherence in relation to finding meaningin relation to colorectal cancer [26]

Some of these factors are supported by findings fromother studies. Ebright and Lyon [5] highlight the impor-tance of social support as a significant factor contribut-ing to a hopeful outlook. Gregoire et al. [11] link socialsupport and information giving to a more positive out-look for prostate cancer patients. Open and repeated ne-gotiations for patient preferences for information is doc-umented as important by Butow et al. [3]. Findings byStanton et al. [31] affirm the importance of active accep-

tance of the diagnosis for positive coping. Fallowfield[8] emphasises the ongoing theme in the literature of theimportance of health professionals engaging in honestand sensitive communication with patients.

The outcome of allowing a positive orientation to un-fold over time with despair acknowledged and integratedis an authentic, rather than artificially forced, positive ori-entation. The findings affirm Herth’s [13] notion that apositive or hopeful outlook is a power that comes fromwithin. It cannot be imposed or given, only fostered. It isthus wise for care-givers to be aware of the limits of theirown ability to give hope [23]. The challenge is to create anurturing space where patients can express the fullness oftheir feelings in a supportive and positive environment.

Clinical implications

Although not articulated as an issue by our study partici-pants, the pressure by health professionals on patients toremain positive is often attributed to a belief that individ-uals with a positive coping style will gain additional pro-longation of life. However, recent findings by Petticrewet al. [25] indicate that there is scant consistent evidenceto support the notion that psychological coping stylesplay an important part in survival from, or recurrence of,cancer. Their strong recommendation is that people withcancer should not feel pressured into adopting a particu-lar coping style. There is now a plethora of findings oncommunication that emphasis the need for health profes-sionals to engage in sensitive, honest and supportivecommunication with patients. The present findings con-tribute to that body of knowledge with the following rec-ommendations for health professionals:

– The need to avoid unwanted pressure on patients to bepositive or to put on a ‘brave face’.

– The appropriateness of being positive around patientsand demonstrating interest in the fullness of their feel-ings.

– Being aware that the process of maintaining a positiveoutlook includes a cycle of despair/negativity and re-adjustment. The process cannot be rush or arbitrarilyimposed.

– To understand that the experience of negative feelingscan be seen as a period of digesting, releasing, facing,and integrating difficult feelings about serious illness.

– To understand that support, honest information andcompassion from others are all factors conducive to fos-tering the process of working through difficult feelingsand coming to terms with a diagnosis of serious illness.

In short, the health professional can nourish the patientwith support, honesty, compassion and a realistic appre-ciation of their situation, but the work of maintaining apositive must come from, and be sustained by, the pa-tient themselves. As Spencer et al. [30] clearly state, it is

32

Fig. 1 Maintaining a positive

the personal and social resources that people bring totreatment for cancer that play a major role in how theyadapt to the experience.

Conclusion

The similarity of insights provided by hospice patientsand haematology survivors make a valuable contributionto deepening our understanding of how to relate to indi-

viduals who face serious illness. The essential messageis that a positive outlook cannot be imposed, but requiresa nurturing orientation that allows the expression of afull range of feelings in a supportive environment. For,as Harvey et al. [12] sum up: “Although it is true thatfear and despair can overwhelm us, hope cannot be pur-chased with the refusal to feel”.

Acknowledgements I would like to sincerely thank Janet Brownfor her excellent work as research assistant for this project.

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