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Page 1: Patients’ experiences of ‘feeling on their own’ following a diagnosis of colorectal cancer: a phenomenological approach

International Journal of Nursing Studies 38 (2001) 651–661

Patients’ experiences of ‘feeling on their own’ following adiagnosis of colorectal cancer: a phenomenological approach

C. Taylor*

Cancer Unit, Northwick Park and St. Mark’s Hospitals, Watford Road, Harrow, Hertfordshire, HA1 3UJ, UK

Received 23 June 2000; received in revised form 2 October 2000; accepted 4 October 2000

Abstract

The aim of this paper is to describe a Hermeneutical phenomenological study of the experience of being diagnosedwith colorectal cancer. The research objective was to understand this particular lived experience and uncover themeanings and structures within it. Eight patients who had been diagnosed with colorectal cancer in the preceding four

weeks were purposively sampled to describe their experiences. Data was generated using semi-structured, in-depth, face-to-face interviews. The data was analysed using the method described by Benner. Six themes were identified as the maincomponents of this experience for these patients. An overview of the participants’ experiences is presented followed by a

more detailed discussion of one of the most poignant themes, which is entitled ‘Feeling ‘on your own’’.# 2001 Elsevier Science Ltd. All rights reserved.

Colorectal cancer is one of the commonest cancers in

the United Kingdom. It affects both men and womenequally, with over 30,000 new cases each year (N.H.S.E.,1997). This means on average, 650 patients are told

every week that they have bowel cancer. Consequentlymany health care professionals have contact withpatients with this disease. Whilst the profile of colorectal

cancer has improved in the last few years, through themedia, the launch of several bowel cancer charities andthrough Government policies, this has yet to fullyimpact on the care patients with cancer receive. Also

evidence informing best practice, for instance, theimportance of addressing cancer patients psychologicalfunctioning at time of diagnosis (Butow et al., 1996), is

not always recognised. There is a need to raise healthcare professionals awareness to colorectal cancer pa-tients’ experiences, promoting the provision of high-

quality patient-centred care.There is no doubt that any cancer diagnosis elicits

multiple emotions and psychological demands (Frank-

Stromberg, 1989; Greer and Silberfarb, 1982; Bliss andJohnston, 1995; Hughes, 1987; Parle et al., 1996).

Anxiety, depression, anger and guilt have been sug-

gested as the commonest reactions to this diagnosis(Peck, 1972). Muzzin et al. (1994) described ‘theexperience of cancer’, as living with the intolerable

incompatibility of life and death. Whilst this may appearan extreme view when many patients have a positiveoutlook, Weisman and Worden (1976) assert that all

newly diagnosed cancer patients will have some‘existential concerns’. The existential affects may includeconsidering the meaning of life, reviewing past achieve-ments and a search of own’s own spirituality. It is not

surprising therefore, that cancer patients often facecommunication difficulties, both within their own familyand in the wider social field (Wortman and Dunkel-

Schetter, 1979; Plant, 1995; Peck, 1972; O’Connor et al.,1990). Difficulty or inability in articulating suchconcerns and reactions, to those close to them, may

add to this distress.This study aimed to increase understanding of the

experiences of a sample of colorectal cancer patients. It

also offered a small group of patients’ recentlydiagnosed with colorectal cancer the opportunity to telltheir own ‘story’ and share their experiences. Throughdescription and analysis, an appreciation of their own

interpretation of the events and emotions experienced*Tel.: +44-20-8869-2472.

E-mail address: [email protected] (C. Taylor).

0020-7489/01/$ - see front matter # 2001 Elsevier Science Ltd. All rights reserved.

PII: S 0 0 2 0 - 7 4 8 9 ( 0 0 ) 0 0 1 0 9 - 7

Page 2: Patients’ experiences of ‘feeling on their own’ following a diagnosis of colorectal cancer: a phenomenological approach

following their diagnosis, was anticipated. Awareness ofthese possible experiences would then be a useful

starting point for individualised therapeutic dialoguebetween a health care professional and a patient justdiagnosed with colorectal cancer. This may be particu-

larly informative when time may be limited and/or thepatient is finding emotional disclosure difficult (Weis-man and Worden, 1976). The findings raise awareness topatients’ experiences following a diagnosis of colorectal

cancer and offer the professional ideas for providingmore sensitive and appropriate interventions to boththese patients, and those close to them.

1. Literature review

The literature review focused on the reactions to, andimplications of, any cancer diagnosis. The literature was

identified through computer searches, supplementedwith articles highlighted from the reference lists of otherarticles. A total of 53 articles were critiqued for the

literature review. Computer searches of Medline from1966, CINAHL from 1982, Clin PSYC, the BritishNursing Index, the National Research Register andRCN Journals from 1985 were completed. CINAHL’s

database provided the majority of the articles, using thefollowing terms: ‘psychological adaptation’, ‘emotionaladjustment’, ‘coping’ and ‘emotions’ with ‘neoplasm’. A

total of 232 articles were published on these subjects,many of which could quickly be disregarded for theirpalliative care bias, paediatric perspective or for their

anecdotal nature.Whilst several authors have interviewed or questioned

patients newly diagnosed with breast cancer (e.g. Bardand Sutherland, 1955; Fallowfield et al., 1986; Luker

et al., 1996) there has been no research exclusivelyfocusing on newly diagnosed colorectal cancer patients.Many studies selected groups of patients with different

types of cancer (Frank-Stromberg, 1989; Peck, 1972;Aitken-Swan and Easson, 1959; Gotay, 1984; Weismanand Worden, 1976), the last three studies comparing

psychological adjustment with type of tumour. Con-trastingly, whereas Pettingale et al. (1988) found noevidence that type of tumour affected overall mental

adjustment, Weisman and Worden (1976) described howpatients with colon cancer had the lowest levels ofpsychosocial concerns, when compared to five otherpatient groups with cancer.

Weisman and Worden (1976) and Gotay’s (1984)studies do base their data on the experience of beingdiagnosed with cancer on interviews with patients in the

first few weeks following their diagnosis. Several studiesin describing the psychological impact of the cancerpatient have interviewed patients months if not years

after their diagnosis (e.g. Frank-Stromberg et al., 1984).This clearly presents a different perspective to interviews

conducted when patients’ initial reactions to theirdiagnosis, should still be remembered and described

with vividness and accuracy. McCorkle andQuint-Benoliel (1983) interviewed lung cancer patientsat one and two months after diagnosis, and found that

time helped patients to assimilate their situation as lesslife threatening.

Many of the studies reviewed were orientated to howpatients cope with cancer (Muzzin et al., 1994; Ell et al.,

1989; Parle et al., 1996) and used a variety of differentresearch methods. Ell et al.’s (1989) study of nearly ahundred colorectal cancer patients concluded that

coping with cancer affects all aspects of one’s life andrequires all available personal and social resources to bebrought to bear. Dunkel-Schetter et al. (1992) used a

cross-sectional design postal survey to identify patternsof coping with cancer. They found patients used a largerepertoire of coping responses; cognitive and behaviour-

al distancing being the most common. Weiner and Dodd(1993) elicited a large amount of qualitative data oncoping with cancer in a prospective study with over 300structured interviews, highlighting the temporal unpre-

dictability and uncertainty created by the diagnosis.These studies however, fail to capture the individualisticand dynamic nature of coping responses that patients

use (Lazarus and Folkman, 1984) and in searching forcoping mechanisms they detract from understanding theexperience in its entirety.

Most of the studies that focus exclusively on theexperiences of colorectal cancer patients are orientatedto effects of treatment. Such studies compare oucomes ofdifferent surgical procedures (Frigell et al., 1990;

Sprangers et al., 1995; Devlin et al., 1971), assess qualityof life post-operatively (Ulander et al., 1997; Williamsand Johnston, 1983), or are orientated to follow-up after

sugery (Kjeldsen et al., 1999). Whynes and Nielson(1997) assessed physical symptoms and psychologicaldistress pre- and post-surgery, to identify the extent to

which pre-operative symptoms persisted after treatment,finding that 80% of patients reported the presence ofworry and nervousness pre-operatively. However, this

data were taken from patients one day pre-operatively:the high levels of anxiety detected are thus moreindicative of their psychological reactions to the treat-ment, than the diagnosis.

Moderate levels of uncertainty and high informationalneeds have been found in colorectal cancer patients bothimmediately following surgical treatment (Galloway and

Graydon, 1996) and six to eight weeks following surgery(Knowles et al., 1999). Knowles et al. (1999) attributedthe higher than anticipated (compared to age-matched

adult norms) anxiety levels detected at this stage, to theirappraisal of the diagnosis. Weisman and Worden’s(1976) study supported that the most difficult time for

patients with colorectal cancer, in general came early intheir treatment follow-up, with the vulnerability dis-

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played in the first few weeks decreasing through the 100-day assessment period. These studies create curiosity for

examining patients’ experiences prior to the start oftreatment.

The above studies chose not to use qualitative

methodologies to investigate the meaning andimpact of the diagnosis, concentrating instead ondescribing more generic reactions and experiences.There is also abundant use of psychological assessments

to report these experiences, (Peck, 1972; Ell et al., 1989;Mischel et al., 1984; Grassi et al., 1993), which whenused alone, may limit the meaningfulness of

personal perspectives. Thus none of the studies de-scribed directly address the concerns and emotions ofbeing diagnosed with colorectal cancer, using a qualita-

tive methodology. It is therefore felt essential to reportthis ‘experience’ from the patient’s perspective, usingtheir own words.

2. Rationale

There is a need for research that describes patients’

experiences following the diagnosis of colorectal cancerand highlights any particular issues that may be createdby this diagnosis. Many of the studies reviewed had a

hypothesis or specific topic of investigation. In thepresent study, a qualitative approach was chosen so thatthe data could speak for itself, and would not be

constrained by a deductive methodology. It wasassumed that interviewing patients within four weeksof being given their diagnosis, would elicit more accurateinterpretations of their experiences of being diagnosed

with colorectal cancer.The researcher felt in a privileged position to have

access to patients so soon after diagnosis, working as a

Macmillan Colorectal Nurse Specialist, and beinginvolved in their care from time of diagnosis. It waspossible to inform many of the patients about the

research at this very early stage in their cancer journey,without feeling that this was insensitive or inappropri-ate, because a sufficiently good rapport had been

established through the clinical contact. The researcherwas also comfortable talking to patients about theirfeelings following the diagnosis and felt she had theinterpersonal skills to address sensitive issues such as

sexuality and death that may be prompted by theresearch technique. Furthermore, any subsequent issuesany participant may have could be addressed later by the

researcher within her clinical remit.It was therefore decided that patients diagnosed with

colorectal cancer should be offered the opportunity to

tell their story within weeks of being given theirdiagnosis, prior to starting any cancer treatment.

3. Research design and methodology

This was a small-scale study, using a qualitativeapproach called Hermeneutical Phenomenology. Theaim of the study was to uncover meanings within a

particular lived experience as described by the partici-pants in order to increase our understanding of theexperience of being diagnosed with colorectal cancer.Hermeneutical Phenomenology differs from Husserlian

Phenomenology, which is more widely described innursing research, having an ontological rather thanepistemological base (Koch, 1995), where understanding

is conceived not as a way of knowing, but as a mode ofbeing (Merleau-Ponty, 1964, cited in Beck, 1994). Thisparadigm was suited to discovering understandings in a

situation where participants may not know, but wherethey will ‘be’, themselves. Ricoeur (1981) clarifies this,‘‘man learns about himself only through his acts,

through exteriorisation of his life and through theeffects it produces on others. He comes to know himselfonly by a detour of understanding, which is, as always,an interpretation’’ (p. 51).

Any pre-judgements about the subject in question areacknowledged and any interpretations by the participantare valued for the contribution they make, throughout

the research process (Gadamer, 1976). This meantwriting regular interpretive notes. These described thefollowing: thoughts about the research, any decisions

made } particularly of a methodological nature, anyassumptions and showed how the researcher’s under-standings developed through the research process, as anaudit trail. This clear account of the research process

was an important means of substantiating the rigor ofthis study. It also necessitated detailed field notes thatwere recorded onto a dictaphone immediately after each

interview. These contained reflections on interviewtechnique, non-verbal communication, communicationswith the participant before and after the interview and

the emotional effect on the researcher. Thus theresearcher’s involvement in the making and presentationof the data is made explicit, and rather than being set

aside, is added to the participant’s interpretations, aspart of the interpretive process. This is referred to as the‘hermeneutical circle’ (Heidegger, 1962, p. 195).

Hermeneutical Phenomenology was also chosen for

its ability to focus in depth, on human experiences asthey are lived. It was felt that other research approacheswould not adequately reveal any imbued or concealed

meanings, or allow these meanings or ‘phenomena’, toappear in their fullest breadth and depth.

The limitations are that the findings are context- and

time-specific and are not therefore generalisable. Fidelityto the ethos of the methodology helped to ensure thatthe findings truly reflected the participant’s lived

experience. Several techniques used during the interviewhelped the credibility of the data, including reflexivity,

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clarification and summarising. The field notes recordedhow the participants’ non-verbal body language and

expression confirmed not only what they were saying,but the ‘deepness’ and ‘realness’ of the data for them.Enabling the participants to communicate freely and

comfortably was clearly a key issue for data collection.There were several salient occasions for the researcherduring the interviews that gave support to the findings;for instance, when a participant found words affirming

their experience that they had not articulated or evenrealised previously, or when the researcher felt afamiliarity with the words being spoken. Participants

were also asked to read and check the accuracy of thetyped transcripts of their interviews as a means ofvalidating their experiences. The ultimate test of the

trustworthiness of the findings is if the reader can believethe conclusions emanating from the data.

4. Data collection

The participants were purposively selected usingColaizzi’s criteria (cited Rose, 1994, p. 57): all partici-pants could articulate that they had bowel cancer, andtalk about what it meant to them as they were living it,

within their life. For practicality, only patients that livedwithin the local health authority, had a contacttelephone number, were well enough to have surgical

treatment, and able to read fluent English, wereincluded. Two eligible patients refused to participate,both stating that they did not have anything they wished

to say on the subject. Eight participants were conve-niently sampled following being told their diagnosis in asurgical out-patient department.

The participants were interviewed in their own homes,

within four weeks of their diagnosis, prior to startingtheir primary treatment. The interviews were one-to-one, in-depth, semi-structured interviews. The data was

collected by use of semi-structured rather than struc-tured interviewing; acknowledging the methodologicalpreference for gentle guidance rather than ‘firm control’

(Rose, 1994; Lincoln and Guba, 1985). To obtain thenecessary depth and breadth of interpretations andmeanings, the interviews were one-to-one and in-depth

(Gordon, 1997). Participants were first asked a non-threatening open question of their experiences: Couldyou start by describing when you first realised that youmight have bowel cancer?

In accordance with the chosen method, minimal leadswere then made (Parse, 1996) allowing the participantsto talk about the issues important to them (Rose, 1994).

The following broad and open-ended questions werehowever prepared, in case participants did not volunta-rily cover these selected areas: e.g. What were your

immediate reactions? How do you feel about having anoperation? How has this affected how you see yourself?

How is this affecting your day-to-day activities? Whatdid you tell your family and friends?

Seven of the interviews lasted between 60 and 90min.One finished earlier as the patient felt he had no more tosay and the interview ceased to be productive (Lane,

1993). The interviews were drawn to a close about10minutes before the end, allowing time for theparticipant to make final disclosures and for theresearcher to summarise and thus verify the interview

content. Probing and engaged active listening were alsoused to encourage dialogue, clarify points, deependescriptions and draw out embedded meanings (Sorrell

and Redmond, 1995; Benner, 1994).

5. Ethics

To address the ethical implications of this study,

patients had to be informed of the following: anonymitycould not be guaranteed, that they could withdraw fromthe study at any stage without jeopardising their

treatment in any way and that during the interview theymay reveal more than anticipated or feel comfortablewith. They were also informed that they would be givena pseudonym and there would be no reference to their

personal identity unless this was necessary for theresearcher’s supervision, but that these discussionswould be confidential. One of the most concerning

ethical issues raised by the study was the potentialvulnerability of the participants. Potential difficultieswithin the interviews were discussed with a clinical

psychologist, who also agreed to the offer of psycholo-gical support to those participants who felt distressedfollowing the interview. Whilst no participants felt theyneeded this, it was important when interviewing patients

at such an early stage in their diagnosis to have suchprovision. Before the interview commenced, patientswritten consent was recorded on the Trust’s Research

Consent Form.The initial question was chosen to allow participants

to describe their experiences in a fairly superficial and

factual way, which did facilitate an easy progression intodeeper levels of dialogue. Subsequently, there was a needto constantly assess the participant’s perceived comfort,

emotional state and negotiate their willingness to talk onsuch potentially sensitive areas. Hence there was a needto balance the desire to collect data, with a concern forthe participant’s welfare. Although the researcher

encouraged the participants to share experiencesthrough use of open questions, using silence andallowing patients closure at the end of the interview, it

was possible that this sensitivity may have limited fulldisclosure. Elements of this experience may not havebeen articulated and thus recorded.

Patients were interviewed in their homes to makethem feel more comfortable with their surroundings and

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feel more control over the process. Before starting theinterview, about 30minutes was spent preparing the

participants for the interview by reiterating that therewere no right or wrong answers, that the researcher wasthere to hear about their experiences and not to judge

them and that they should only reveal what they feltcomfortable sharing. Finally, there was debriefing afterthe interview, as emotional recovery time for theparticipants, before resuming their normal activities.

Ethical approval was gained from the Trust’s ethicalcommittee.

6. Data analysis

Participants’ experiences were recorded and thentranscribed. My interpretations were recorded in thefield notes. All participants were sent their own

transcripts to check and comment on their accuracy.The data was analysed using the process described byBenner (1994, p. 59) to elicit themes and find exemplars.The process initially involved reading each interview

transcript several times, then intuiting and analysing thecontent by trying to see beyond a quote at face value.Quotes appearing to contain similar content were

grouped together in categories and further analysed tofind descriptions for the true meanings within their text.From this process, six main categories of experience or

‘themes’, were identified primarily from the dataemanating directly from the eight transcripts butsignificantly influenced by the researcher’s interpretivenotes.

When the draft of the first theme was completed it wassubmitted to two critical readers alongside the support-ing evidence, as an independent review to support the

credibility of the data analysis. The critical readers wereselected for having considerable experience of this client

group and familiarity with qualitative research. Theywere satisfied with the analysis and one commented onthe uncanny familiarity she had had on first reading the

participants’ quotes. Three of the participants hadspontaneously volunteered to be of further assistanceat the end of their interviews, and so were contacted todiscuss the researcher’s interpretations, clarify any

uncertainties and to check the accuracy of the analysis.When the six themes were finalised, the interview

transcripts were then read again to confirm that they

captured the full meanings within the experience and toidentify any ‘exemplars’ that could be used for illustra-tion of these themes within the interpretive account. Five

specific descriptions were identified within the text thatdescribed one of the themes or sub-themes in a way thateither showed the particular unit of analysis in its

entirety or offered greater insight than could be revealedby displaying just a quote from within it. These werethen woven into the written account of the findingsalongside participants’ quotes, extracts from literature,

the researcher’s personal observations and entries fromthe audit trail and field notes.

7. The findings

Six themes were identified. Together they presentthese participants’ experiences of being diagnosed withcolorectal cancer. Each theme has one or more sub-themes (see Table 1). The themes are presented

sequentially; the first three positioned as they wereinterpreted to have occurred within their experiences;the next two fitting logically into this order and the last

Table 1

Main themes Sub-themes

(1) Making sense of the diagnosis Getting over the shock

Searching for answers

Putting it in perspective

Comparing with others’ experiences

(2) Fearing the worst Preparing for dying

Worrying that the cancer will spread

(3) Redefining the future Reviewing life

Facing the unknown

Anticipating new ways of being

(4) Having to go with the treatment Handing over responsibility

(5) Managing day-to-day Containing it

Keeping busy

Looking on the bright side

(6) Feeling ‘on your own’ Seeking support

Protecting others

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theme was pervasive throughout all the experience. Thelast theme ‘feeling on your own’ shall be discussed in

more depth after an overview of the other themes.

8. Summary of the experience

The participants’ initial descriptions revealed how

shocked they were by the news. They felt frightened anduncertain about the future, worrying about the treat-ments proposed, the cancer spreading and survivingboth the surgery and the cancer. This was perceived as a

sufficient threat to their lives to make plans for theirdeath.

The associated emotions were difficult to tolerate at

times and were not always shared with those close tothem. They discussed how they managed these emotionsday by day: by keeping busy, containing it and looking

on the bright side. Not only did participants have to findways of managing their own emotions, but they wereclearly concerned about the pain that their diagnosis wascausing to others close to them. Participants detailed

accounts of when they told their family the ‘bad news’,illustrated the scope of this angst. As a result, theparticipants were understandably protective to those

they loved; playing down their concerns, omitting theirworst fears and deciding not to tell certain familymembers. The desire to protect others was interpreted to

create barriers in communication that distanced themfrom others. This experience was part of the themeentitled ‘feeling on your own’ that has been selected to

discuss in more detail due to its lack of reference in thecancer literature and its poignancy.

9. Feeling ‘on your own’

This theme explores the participants’ experiences of

how the diagnosis affected their perceptions of self andtheir relationships with others. They were forced tothink about themselves and their significant relation-

ships with others, and in doing so appeared to movethrough a very personal emotional journey recountingwho they were, what they had achieved, what their

values and beliefs were, and who mattered most in theirlives. All but one of the participants had clearly taken‘time out’ to reflect on their lives, as a result of thisexperience.

Whilst they recounted this greater picture of their life,their descriptions of self suggested that they wereremoved from the here and now. It seemed this was

both a consequence of the abstraction of their reflexivityand through considering the possibility of their owndeath, they had contemplated life carrying on without

them. This feeling of detachment was also apparent on amore local level, the normal activities they were

normally involved in, perceived to be continuing tohappen around or outside of them. Half of the

participants alluded to feelings of isolation and socialembarrassment by the diagnosis; one made his thoughtson this explicit:

What can’t they talk about it for, what’s wrong with it,

you know like you have leprosy or something..they’d bestanding talking and you couldn’t talk to them ..if ..ifthey brought it up you could talk more to them then...

but they wouldn’t bring the subject up. They’d bring itup with the wife and talk to her, but to you they wereall...you know they’d be sat talking in the kitchen and

you’d walk into the room and everything quiet..sothat’s ... but other people seem to feel embarrassedabout talking about it and then that makes you feel

embarrassed(The italics represent the participants’ verbatimcomments)

This participant describes the sense of exclusion

experienced both by sensing that other people weretalking about him and ‘it’ without him, and his owndifficulty in communicating about the cancer with

others. A couple of participants had witnessed peopleavoid them and had painfully felt the stigma of beingbranded a ‘cancer patient’. Two compared theirexperience with having leprosy and AIDS. These

analogies indicate the effects that the diagnosis had onself-image, social identity and the felt social restrictions.

In some interviews the experience of feeling on their

own, was more visible in the way participants describedtheir experiences, than in the content: I did this, I feelthat, I am. Many of the participants talked about

anticipated changes in self: what they might look or feellike after the surgery and possible effects of chemother-apy. They imagined new ways of being that would makethem ‘feel’ different, e.g. would they lose their hair,

would the scar show, how would their bowels function.This seemed to be a bigger point of discussion for themen than the women.

As described in the methodology, interpretations ofeach interview had been recorded in the field notes andthese formed a valuable part of the data analysed. One

of the participant’s, whose reflections are below,commented after the interview that he had not realiseduntil he had expressed his feelings to the researcher, that

he felt like this:

‘‘And when we received this news I felt very alone..um,because however close people are to you, your wife,your children, whatever you want to call them. It’s

actually happening to you, not to them’’. . .‘‘}what’sgoing to happen is going to happen to my body, nobodyelse’s body. And however..we use the word em-

pathy...there are corners of you which think, ‘You’reon your own buddy’ ’’.

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When this participant said these words, the researcherexperienced a coldness in the air and an emotional

distance come between them. The experience quitepowerfully reinforced his sense of isolation. It was hisbody and thus only he would and could experience what

it meant to have colorectal cancer. It was interesting thaton subsequent discussion with this participant (duringthe analysis process on this theme), that he realisedthrough articulating his experiences, the sense of

uniqueness had lessened for him. It would seem reason-able to suggest that by sharing his feelings and thoughts,he felt less ‘on his own’. This indicated the next aspect of

the theme, which was the difficulty in sharing suchthoughts and feelings.

I don’t talk to him about it. We don’t talk about it.

Oh yes, of course, (you think you’re dying) but Ihaven’t said that to anybody else

Several participants admitted to relationships wherethey felt unable to communicate openly and share

concerns, for fear of upsetting others. This wasconfounded by their difficulty in talking about thecancer diagnosis and any associated feelings. Hence their

difficulty and sometimes inability to discuss the situationwith others close to them, prevented the sense ofsharing, of getting through it together. It was interpreted

that they felt guilty about causing other family membersworry, often expressing that the family had enoughstress to deal with, without this. This created a situation

where no one said anything too emotional about thesituation for fear of upsetting the other:

it’s him I worry about now because he looks sodrawn..and I think I can’t do anything, you know. I justgot to carry on..I don’t know how to alleviate him. If I

was...if I was in his position, I would be the same....ButI can’t physically help the family in that respect.

There was awareness that the diagnosis did inevitablyaffect all the family, and they appeared to believe that it

would be helpful to be silent. However, this createdbarriers in communicating with those that they wouldusually rely on the most to share their experiences. Some

of the participants stated that as long as they presentedan appearance of confidence and calmness about theirsituation to the rest of the family, however difficult thatmight be, then may be they would all be able to cope.

Consequently, they adopted a superficial cheerfulness inan attempt to avoid discussing the real issues. Ironicallythis impasse in communication backfired, since they had

little insight into how particularly their spouses werefaring, and they worried more. All the participantsdescribed this inhibition or inability to communicate,

which for some created the silences that furtherreinforced the feeling that they were on their own.

Finally it was clear that when participants were ableto recruit the support of others, their loneliness was

moderated.

To know that there are people there that I can enjoy

life with and do things with, if I need to talk about itthat I can talk about it... It’s the knowing that peopleare there.

Even those who felt that the people around themcould not understand or share in this experience, having

them there was still supportive. The participants in thisstudy also gained comfort from the support that camefrom friends and acquaintances who had had similar

experiences, health-care professionals and for some,their faith brought great solace.

This theme addressed both personal and public

attitudes to cancer, reflections on life, family andrelationships with others, feelings about self, andcommunication and coping within the family. Theirreasons for feeling alone were variable in expression, for

some it was the social embarrassment, for others thedifficulty in sharing feelings with the family and forothers the perceived individuality of their experience and

anticipated changes in self. In summary, it appeared thatthe main reason causing their sense of isolation was thegeneral inhibition to communicate about cancer.

10. Discussion

Meanings and personal interpretations matter withinHermeneutical Phenomenology (Leonard, 1994), so theresearcher will now refer to her own interpretations

during the study using the first person. Thus, thismethod allowed me to incorporate any experiencesrather than having to bracket or guard against these as

potential sources of bias. Consequently it has increasedunderstandings of self as well as, the experience. Themethodology not only suited my own beliefs, but kept

the orientation of the research to the participants’subjective perceptions, valuing both individualism andholism allowing this experience to be fully described.

The results presented looked at one of the six themesthat was elicited from the data, entitled ‘Feeling on yourown’. This theme can be summarised as follows: theparticipants perceived that no one else could appreciate

the impact of this diagnosis on their bodies, their need toprotect others, coupled with the existing personal andsocial difficulties in talking about cancer and the

associated emotions of fear and embarrassment thatled to a sense of ‘aloneness’. This theme was selected fordiscussion following its exposition as one of the

participants’ most pervasive and powerful experiences,revealing not only the personal difficulties of being

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diagnosed with colorectal cancer, but also the socialimplications of the diagnosis.

Comparisons with research findings of patients withother cancer diagnoses are not possible with thisresearch methodology. However, it was felt that having

bowel cancer did make it more difficult for some of theparticipants to talk about their condition and explain toothers, due to the taboo around discussing bowels and alack of understanding of their anatomy and function.

The bowels are an area of the body not discussed inpolite company and are associated with dirt and smell.This social viewpoint, can only add to the known

stigmatisation of cancer (Sontag, 1978), heighteningperceived sense of aloneness.

Whilst all the other themes were supported by existing

research findings, the last theme was only referenced inthe literature by implication, as both cancer patients’need for support, which was also described in this study

(Dunkel-Schetter et al., 1992; O’Connor et al., 1990;Weisman and Worden, 1976; Frank-Stromberg et al.,1984; Ell et al., 1989; Grassi et al., 1993; Weiner andDodd, 1993) and also their difficulty communicating

with those close to them (Peck, 1972; Bliss andJohnston, 1995; Plant, 1995; Dunkel-Schetter et al.,1992). But these studies did not state that these patients

felt isolated, excluded and very alone. So whilst thisexperience is not being newly reported, its significancefor these participants is.

It was their difficulty in communicating with thoseclosest to them that really surprised me; they stated thatthere had been very few other events in their life wherethey had not shared their thoughts with their spouse or

children. Their discomfort in social interaction and asense of uneasiness with intimacy, established a sense ofexclusion, leading to further isolation. Their interpreta-

tions of the diagnosis and expectations of the future alsoled to changes in their perceptions of self, again makingthem feel ‘less normal’ and possibly different.

I feel the interviews captured the experience of beingdiagnosed with colorectal cancer. The majority of theparticipants also responded that they had found the

experience of being interviewed helpful, presumably byproviding them with the opportunity to share suchthoughts and allow some catharsis. A couple ofparticipants commented that they had not revealed the

content of their interview to anyone else, which was alsofelt to confirm the trustworthiness of the data. Threeparticipants later told me that they had shown the

interview transcripts to their spouses, an unexpectedoutcome which I hoped may have addressed their‘feeling of being on their own’.

This research has been of great personal benefit,informing my role as a Macmillan nurse, whensupporting patients recently diagnosed with colorectal

cancer. In particular, it has increased my understandingof their possible reactions and experiences. When

patients are searching for the words to explain howthey feel, I sometimes use either the title of one of the

sub-themes or a verbatim quote from one of theparticipants as an educated guess about how they mightbe feeling. Whilst recognising that not all patients

diagnosed with colorectal cancer are going to experiencewhat has been interpreted in this study, I believe it mayprovide a framework to start assessing patients’experiences.

I quickly appreciated the difficulties of qualitativeresearch when I started the interviews. There wasconsiderable learning during the interview process and

I was aware that as my interviewing skills andconfidence increased, so did the quality and quantityof the data. Initially the powerful nature of the data

revealed in each interview was hard to disassociate from.I found that the participants’ experiences caused me tothink about the meaning of life, future life and possible

death and made me confront my own mortality. I alsohad a strong feeling of responsibility and involvement tothe participants which sometimes conflicted with my roleas their Macmillan nurse. Whilst my self-awareness and

field-note dictation helped, clinical supervision was veryvaluable for putting my experiences back into perspec-tive. By the eighth interview I had reached an emotional

saturation, that I felt would stop me remaining open tonew data.

I had not been prepared for the amount of data

generated: the transcripts totalled over a hundred pagesof A4, plus field notes and the audit trail. Some of thedata I interpreted as ambiguous and so spent hoursmoving from one pile of possible themes to another, and

felt I was going round in circles at times. Data analysiswas therefore much more time consuming than firstrealised. However, there comes great satisfaction with

the belief that new understandings and knowledge aregained as to the nature and meaning of the livedexperience of being diagnosed with colorectal cancer.

11. Limitations

Several limitations have been identified earlier in the

text. The number of participants was one majorlimitation. There proved to be a smaller number ofeligible patients than originally expected: two patientswho were eligible and informed of the study declined to

participate. Sampling was limited by the uncertaintythat some patients expressed uncertainty as to whethertheir bowel tumour was benign or malignant. Although

Phenomenological studies generally have a small num-ber of participants, only interviewing eight made itdifficult to add breadth to some of the themes, in

situations where only one participant described differentexperiences to the others.

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The study was only able to provide a ‘snapshot’ ofwhat this experience may be like. However the

philosophy helped to compensate for this, by supportingthe notion of multiple realities, allowing a description ofthe progression of emotions and thoughts, rather than a

contextual and static interpretation of the experience. Byencouraging contextualisation of these experiences,there is an expectation that the participants’ experienceswill continue to develop as time passes. Further long-

itudinal research, interviewing patients just after dis-charge from hospital, after three, six and then 12 monthswould be a fascinating annexation, to see how their

interpretations change over this time frame.The data was as thorough as the participants chose to

make it and to some extent as I encouraged it to be. It

cannot be assumed that every participants experience ofthis phenomenon was captured in its entirety (Phillips,1993). In such intensely emotional experiences there are

bound to be limitations of the spoken word. Whilst non-verbal data was recorded through the field notes, it islikely that some of this communication was lost.Videoing the interviews would have been one solution,

but I feel this would have been intrusive and may havelimited recruitment and participant comfort. Anotherpossibility would have been to supplement the interviews

with a follow-up questionnaire. Establishing the com-pleteness of the data was addressed by the furtherinvolvement of the participants in the data analysis.

12. Conclusion

Heideggerian Phenomenology was the methodologychosen to find deeper understandings of this particularhuman experience and open up new meanings of what it

may mean to be a person. It was felt that its inductiveand descriptive nature and recognition of the subjec-tiveness of experience helped to generate a tremendous

amount of data on the experience of being diagnosedwith colorectal cancer. Of the six themes identified in thedata, one theme entitled ‘Feeling on your own’ was

presented in more detail. This theme addressed thedifficulties in communicating the cancer diagnosis,particularly but not only, amongst close family and

friends, but also amongst their neighbours, workcolleagues and other acquaintances. They discussed thestress in everyday situations where some sort ofexplanation as to what was wrong with them was now

required. There were feelings of awkwardness andembarrassment in knowing what to say and how tosay it, on both sides.

Patients need time to make sense of their diagnosis,opportunities for their questions to be answered, time togrieve for any anticipated losses and the offer of support,

from diagnosis and through their treatment. Thefindings were presented to highlight the commonalties

of this experience between the participants, but it mustbe remembered that this experience is unique to each

person.

13. Implications for health care professionals

Health care professionals must consider the best way

to demonstrate an understanding of their patient’ssituation and how to give them sufficient and adequatereassurance and information in order to make thisexperience feel less frightening, uncertain and isolating.

Normalising patient’s experiences can be a valuable firststep in counteracting the sense of ‘aloneness’. Theprocess of acknowledging and normalising patients

reactions is best addressed in the first few days afterdiagnosis, preferably face-to-face. Patients need privacy,a feeling of security and time, in order to feel comfortable

disclosing their feelings and concerns. Patients who havejust been diagnosed with colorectal cancer and who areawaiting treatment, should be offered a pre-treatment

consultation, by someone knowledgeable about thesetreatments and able to counsel patients. Having avail-ability to a contact person has been identified as beingreassuring (Knowles et al., 1999).

It is suggested that entering into a dialogue with apatient to talk about such experiences may be difficultfor many nurses (Menzies, 1960; Maguire, 1985).

However such skills can be developed, if support andguidance is given (Tait et al., 1982). Teaching of suchcommunication skills must be addressed within nursing

and medical school education. Equally important to theskills training is the provision of adequate emotionalsupport, to enable health care professionals to cope withthe information that such communication skills can

yield. Providing clinical supervision to personnel wherethis level and intensity of communication is required, isessential in preventing emotional burnout.

Information on how the surgery will affect appear-ance, function and feelings should also be offered in pre-operative assessment schedules, letting the patient

dictate the amount and type of information given atthis time. It appears that patients with colorectal cancerseek information in order to reappraise the threat of the

diagnosis and treatments (Knowles et al., 1999). Patientsinformation needs should be supplemented with writtenliterature, using familiar vocabulary and pictures thatillustrate the part of the body involved. It may also be

useful to discuss what the patient wants to tell the familyand how to phrase and explain their diagnosis andtreatment. It is important to consider the impact that the

diagnosis may have had on the whole family and alsooffer them support and involvement in any discussions.

Whilst this is a very personal experience, there are

other patients who have had colorectal cancer who mayhave had similar experiences. Offering access to patients

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who have ‘been there’ and come out the other side canbe tremendously comforting in counteracting the belief

that no one else could ever know what they were goingor would go through. I have a list of patients who havefinished treatment for colorectal cancer and who have

volunteered their support to ‘new’ patients either overthe phone or in person.

Support groups, helplines run by cancer charities andother specialist agencies can offer a lifeline to patients

and their families, helping them feel they have access topeople who will be able to help them, if and when theyneed it. It appeared for some participants that knowing

that there were ‘people out there’ was sufficient inhelping them get through the experience.

There is also a wider need to help these patients feel

less stigmatised by this diagnosis. This requires increas-ing public awareness to bowel cancer. There is a need toinform the public about all those that survive cancer, the

small number of patients requiring permanent stomas(Karanjia et al., 1994) and the ease with which mostpatients get through the surgery. We also need to breakdown the taboos associated with bowels and make it

acceptable to use the word ‘bowel’ in public. Nursesrepresent such a large working population and use thisword everyday in their work with patients; hence, we

should seize the opportunity to be a clearly powerfulgroup of opinion formers in this respect.

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