8
Communication Study Cancer patients’ expressions of emotional cues and concerns and oncology nurses’ responses, in an online patient–nurse communication service Gro Hjelmeland Grimsbø a, *, Cornelia M. Ruland b , Arnstein Finset c a Center for Shared Decision Making and Collaborative Care, Oslo University Hospital, Rikshospitalet, Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Norway b Center for Shared Decision Making and Collaborative Care, Oslo University Hospital, Rikshospitalet and Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Norway c Department of Behavioural Science, Institute of Basic Medical Sciences, Faculty of Medicine, University of Oslo, Oslo, Norway 1. Introduction Cancer patients suffer from high levels of emotional distress [1– 3]. In their encounters with health care providers patients express their emotional distress in a variety of ways: verbally, by tone of voice, with facial expressions and through body language [4]. However, studies have shown that oncologists often fail to recognize patients’ emotional distress [5], and that nurses tend to overlook patients’ social and emotional needs [6]. Moreover, many patients find it hard to express their emotional problems directly and spontaneously in their medical consultations. When conveyed at all, their emotions are often expressed as an indirect hint of an underlying feeling, often referred to in the literature as cues. Such cues may be difficult to detect and are often missed by the doctor [29] Besides face-to face communication in health care, there is a growing development of Internet support systems that among other services, offer patients’ possibilities for e mail-communica- tion with health care providers [7]. Some studies have described the content of this specific e-mail correspondence, primarily with a focus on e-mail messages exchanged between patients and physicians [8–11,23]. The most common message type in e-mail communication between physicians and patients are found to be information updates to the physicians, prescription renewals, health questions, questions about test results and referrals. Very few e-mail messages are found to include sensitive content, and urgent messages [9] .Ye et al.’s review showed that medical information exchange, medical condition or update, medication information, and sub-speciality evaluation was well represented in the e-mail messages [10]. In Roter’s study [8], the authors concluded that e-mails between patients and physicians accom- plish informational tasks, but may also be a vehicle for emotional support and partnership. Roter et al. concluded that e-mail communication has the potential to support the doctor–patient relationship by providing a medium through which patients can express worries and concerns, and physicians can be patient- centred in response. Interventions have been developed to arrange email commu- nication between patients’ and nurses [30–35]. However, studies Patient Education and Counseling 88 (2012) 36–43 A R T I C L E I N F O Article history: Received 17 July 2011 Received in revised form 11 January 2012 Accepted 14 January 2012 Keywords: Cancer E-mail communication Emotions Cues Concerns Oncology nurses A B S T R A C T Objective: To (1) investigate emotional cues and concerns (C&C) of cancer patients expressed in e-mail communication with oncology nurses in an online patient–nurse communication service (OPNC), and (2) explore how nurses responded to patients’ C&C. Methods: 283 e-messages sent from 38 breast and 22 prostate cancer patients and 286 e-responses from five oncology nurses were coded with the Verona Coding Definitions of Emotional Sequences. Results: We identified 102 cues and 33 concerns expressed in patients’ messages. Cues indicating expression of uncertainty or hope, occurred most frequently (in 38.5% of messages), followed by concerns (in 24.4% of messages). Nurses responded to 85.2% of patients’ C&Cs; more than half of patients’ C&Cs were met with a mixture of information giving and empathic responses. Conclusion: Patients with breast and prostate cancer express many C&C in e-mail communications with oncology nurses, who demonstrated satisfactory sensitivity to patients’ emotions in their responses to patients. Practice implications: Offering e-communication with oncology nurses to cancer patients is a promising and feasible supplement to usual care to address and relieve patients’ concerns and emotional distress during illness and recovery. ß 2012 Elsevier Ireland Ltd. All rights reserved. * Corresponding author at: Oslo and Akershus University College of Applied Sciences, Postboks 4, St. Olavs plass, NO-0130 Oslo, Norway. Tel.: +47 92 48 54 02. E-mail address: [email protected] (G.H. Grimsbø). Contents lists available at SciVerse ScienceDirect Patient Education and Counseling jo ur n al h o mep ag e: w ww .elsevier .co m /loc ate/p ated u co u 0738-3991/$ see front matter ß 2012 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2012.01.007

Cancer patients’ expressions of emotional cues and concerns and oncology nurses’ responses, in an online patient–nurse communication service

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Page 1: Cancer patients’ expressions of emotional cues and concerns and oncology nurses’ responses, in an online patient–nurse communication service

Patient Education and Counseling 88 (2012) 36–43

Communication Study

Cancer patients’ expressions of emotional cues and concerns and oncology nurses’responses, in an online patient–nurse communication service

Gro Hjelmeland Grimsbø a,*, Cornelia M. Ruland b, Arnstein Finset c

a Center for Shared Decision Making and Collaborative Care, Oslo University Hospital, Rikshospitalet, Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Norwayb Center for Shared Decision Making and Collaborative Care, Oslo University Hospital, Rikshospitalet and Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Norwayc Department of Behavioural Science, Institute of Basic Medical Sciences, Faculty of Medicine, University of Oslo, Oslo, Norway

A R T I C L E I N F O

Article history:

Received 17 July 2011

Received in revised form 11 January 2012

Accepted 14 January 2012

Keywords:

Cancer

E-mail communication

Emotions

Cues

Concerns

Oncology nurses

A B S T R A C T

Objective: To (1) investigate emotional cues and concerns (C&C) of cancer patients expressed in e-mail

communication with oncology nurses in an online patient–nurse communication service (OPNC), and (2)

explore how nurses responded to patients’ C&C.

Methods: 283 e-messages sent from 38 breast and 22 prostate cancer patients and 286 e-responses from

five oncology nurses were coded with the Verona Coding Definitions of Emotional Sequences.

Results: We identified 102 cues and 33 concerns expressed in patients’ messages. Cues indicating

expression of uncertainty or hope, occurred most frequently (in 38.5% of messages), followed by concerns

(in 24.4% of messages). Nurses responded to 85.2% of patients’ C&Cs; more than half of patients’ C&Cs

were met with a mixture of information giving and empathic responses.

Conclusion: Patients with breast and prostate cancer express many C&C in e-mail communications with

oncology nurses, who demonstrated satisfactory sensitivity to patients’ emotions in their responses to

patients.

Practice implications: Offering e-communication with oncology nurses to cancer patients is a promising

and feasible supplement to usual care to address and relieve patients’ concerns and emotional distress

during illness and recovery.

� 2012 Elsevier Ireland Ltd. All rights reserved.

Contents lists available at SciVerse ScienceDirect

Patient Education and Counseling

jo ur n al h o mep ag e: w ww .e lsev ier . co m / loc ate /p ated u co u

1. Introduction

Cancer patients suffer from high levels of emotional distress [1–3]. In their encounters with health care providers patients expresstheir emotional distress in a variety of ways: verbally, by tone ofvoice, with facial expressions and through body language [4].However, studies have shown that oncologists often fail torecognize patients’ emotional distress [5], and that nurses tendto overlook patients’ social and emotional needs [6]. Moreover,many patients find it hard to express their emotional problemsdirectly and spontaneously in their medical consultations. Whenconveyed at all, their emotions are often expressed as an indirecthint of an underlying feeling, often referred to in the literature ascues. Such cues may be difficult to detect and are often missed bythe doctor [29]

Besides face-to face communication in health care, there is agrowing development of Internet support systems that among

* Corresponding author at: Oslo and Akershus University College of Applied

Sciences, Postboks 4, St. Olavs plass, NO-0130 Oslo, Norway. Tel.: +47 92 48 54 02.

E-mail address: [email protected] (G.H. Grimsbø).

0738-3991/$ – see front matter � 2012 Elsevier Ireland Ltd. All rights reserved.

doi:10.1016/j.pec.2012.01.007

other services, offer patients’ possibilities for e mail-communica-tion with health care providers [7]. Some studies have describedthe content of this specific e-mail correspondence, primarily with afocus on e-mail messages exchanged between patients andphysicians [8–11,23]. The most common message type in e-mailcommunication between physicians and patients are found to beinformation updates to the physicians, prescription renewals,health questions, questions about test results and referrals. Veryfew e-mail messages are found to include sensitive content, andurgent messages [9] .Ye et al.’s review showed that medicalinformation exchange, medical condition or update, medicationinformation, and sub-speciality evaluation was well represented inthe e-mail messages [10]. In Roter’s study [8], the authorsconcluded that e-mails between patients and physicians accom-plish informational tasks, but may also be a vehicle for emotionalsupport and partnership. Roter et al. concluded that e-mailcommunication has the potential to support the doctor–patientrelationship by providing a medium through which patients canexpress worries and concerns, and physicians can be patient-centred in response.

Interventions have been developed to arrange email commu-nication between patients’ and nurses [30–35]. However, studies

Page 2: Cancer patients’ expressions of emotional cues and concerns and oncology nurses’ responses, in an online patient–nurse communication service

G.H. Grimsbø et al. / Patient Education and Counseling 88 (2012) 36–43 37

which have explored the content of e-mail communicationexchanged between patients and nurses are scarce [12]. There isalso a lack of research on if, or how, patients communicate theirpsychological distress and emotions through e-mail messages withhealth care providers in general. More specifically, we do not knowwhether expressions of emotion are of a similar nature in writtene-mail exchange as in spoken discourse in terms of the distinctionsbetween ambiguous cues to emotions and explicit expressions ofemotional concerns and worries. Whether or not health careproviders pick up and respond to the patients’ emotional contentsin their e-mail responses to patients is also still an unknownresearch area. We know from earlier studies on face to faceinteractions between patients and nurses that cue-respondingbehaviour from the nurses may facilitate the disclosure of worriesand concerns of patients [13], that nurses’ cue respondingbehaviour is appreciated by the patients [14] and that respondingto patients’ emotions is likely to improve information recall [15].

Against this background, the purpose of this study was toexamine the electronic communication between cancer patientsand oncology nurses and to answer the following researchquestions:

1. To what extent do e-messages from cancer patients to oncologynurses include expressions with emotional content? Further, towhat extent is emotional content in these messages expressedindirectly without use of specific emotional words (cues), orexpressed directly, with the application of specific emotionalwords (concerns)?

2. To the extent that cancer patients express emotional content intheir e-mail messages, do the oncology nurses pick up andrespond to the emotional expressions in their e-mail responsesto the patients?

The present study is the first to apply the Verona CodingDefinitions of Emotional Sequences (VR-CoDES-CC) to explorewritten communication in e-mail messages between cancerpatients and nurses. A secondary research question of thepresent study is therefore the following:

3. How well are the VR-CoDES suited as a method to analysewritten communication in an online patient–nurse communi-cation service?

The study focuses on prostate cancer patients and female breastcancer patients. Due to earlier research on the genderedcommunication in online cancer support groups [24,25], weexpected that the female breast cancer patients should express ahigher degree of emotion in their e-mail messages compared to themale prostate cancer patients.

2. Method

The present work is a sub-study of a larger project in which anInternet based support system named WebChoice, was tested in arandomized clinical trial (RCT) with 325 breast and prostate cancerpatients [7]. Patients were recruited through adverts in thenewspaper, on the Norwegian Cancer Society’s website and itsmembership magazine as well as through information pamphletsmailed to patients from the Norwegian National Cancer Registry.Inclusion criteria were age 18 or above, ability to read/speakNorwegian and internet access at home. To be included, the patienthad to be in active treatment for breast or prostate cancer whenincluded in the study.

Patients in the experimental group got access to WebChoicefrom the privacy of their homes for a study period of one year, andcould use the online patient–nurse communication service (OPNC)to ask questions, share experiences with, and ask advice from

oncology nurses. The nurses entered the communication areadaily, answered the patient’s questions and concerns and providedinformation, support and counselling. The WebChoice system withall its components is described in detail elsewhere [7,12,16,17]. Formore information about WebChoice, visit: www.communicare-tools.org.

2.1. Procedures

The study was approved by the Regional committee forResearch Ethics in Norway (REK) and the Data Inspectorate. Allprocedures complied with the Norwegian Personal Data Act.Written informed consent was obtained from all patients andnurses.

To collect the text materials for analyses, we copied and savedall the 569 e-mail messages exchanged between the patients andthe nurses in the OPNC service during the selected period, andstored them in separate word documents, one for each patient’scommunication exchange with the oncology nurses.

Five different nurses answered the patients’ e-mail messages aspart of this study.

2.2. Analysis

The Verona Coding definitions of Emotional Sequences (VeronaCoDES-CC) [18] and Health care providers responses (VeronaCoDES-P) [19] were used to code patient cues and/or concerns(C&Cs) and nurses responses in the e-mail communication.According to the manual, cues are defined as ‘verbal or non verbalhints, which suggests an underlying unpleasant emotion and thatlacks clarity.’ Concerns are defined as ‘clear and unambiguousexpressions of an unpleasant current or recent emotion that isexplicitly verbalised with or without a stated issue of importance’[18].

Analyses of the 569 e-mail messages were conducted in thefollowing steps:

1. Three trained coders coded the cancer patients’ C&Cs expressedin their e-mail messages using the VR-CoDES-CC (see Table 2).

2. The same coders coded the oncology nurses’ e-mail responses toeach patients’ expression of C&Cs in the material using the VR-CoDES-P [19].

3. One independent coder coded 110 e-mail messages, randomlyselected from all three trained coders. Cohen’s Kappa was 0.51.Since the Kappa of 0.51 was considered low, we analysed thediscrepancies between the original coder and the referencecoder. All instances (15) of disagreement between the originalcoder and the reference coder were consensus coded by twoauthors (GHG, AF). Fourteen of the fifteen utterances coded bythe original coder were in the control coding by the authorscoded as a cue or a concern. This indicates that those utterancescoded as cues and concerns in this study are valid, but that thecoders may have missed some potential C&Cs

4. A qualitative examination of types of C&Cs expressed in the e-mail messages was conducted. We clustered expressions ofC&Cs in a table to explore the direct expressions of emotions andto examine the topics and themes for which the patientsexpressed emotions in the material.

5. The oncology nurses’ responses to the cancer patients’ C&Cswhich were analysed in step two, were re-analysed by GHG andcoded within three new response categories: (1) No response;(2) Information and advice; (3) Information advice withempathic response. Responses were coded into the lattercategory in instances where the nurse gave informative advicein addition to emphasizing with the patients hint to emotionaldistress or concern. The oncology nurse had to demonstrate in

Page 3: Cancer patients’ expressions of emotional cues and concerns and oncology nurses’ responses, in an online patient–nurse communication service

Table 1Definitions of cues and concerns and qualitative examples from the e-mail material.

Expression Definitions Examples from the patients e mail messages

CONCERN: Clear verbalisation

of an unpleasant

emotional state

Emotion is current or recent and issue of importance is

not stated.

Issue of recent or current importance is stated (life

events, social problems, symptoms, other issues).

‘The reason is that there are a lot of things concerning me

(probably more than is necessary) right now.’

‘I have been afraid of cancer all my life.. will probably still be

worried about recurrence and new cancer.’

‘I was expecting a drop (in PSA values)and became worried.’

‘I am afraid that the doctors haven’t noticed that the illness

have increased, and that I am not getting the necessary

treatment to halt its development.’

CUE: Expression in which

the emotion is not clearly

verbalized or might

be present.

A. Words or phrases in which the patient use vague or

unspecified words to describe his/her emotions.

‘It’s amazing how much of your own time and effort you have

to spend.’

‘I don’t feel good about going on disability benefits.’

‘I sometimes have the feeling that I am left hanging in the air.’

The criteria of currency/

recentness is not

applicable

B. Verbal hints to hidden concerns (emphasizing,

unusual words, unusual description of symptoms,

profanities, metaphors, ambiguous words, double

negatives, exclamations, expressions of uncertainties

and hope regarding stated problems)

‘Damn well not feeling safe with this system’ (Profanties).

‘It’s said that prostate cancer is an illness you die with, not of,

generally. I have gotten it into my head that this one doesn’t

count when you are 47 years’ (uncertainties)

‘Nothing else to do than try to be patient and hope for the best.’

(expression of hope regarded stated problems)

‘Hoping this will stop when I am finished with my hormone

treatment’ (expression of hope regarding stated problems)

‘Got a slap in the face’ (because of rising PSA values)

(metaphor)

C. Words or phrases which emphasize (verbally or non

verbally) psychological or cognitive correlations

(regarding sleep, appetite, physical energy,

concentration, excitement or motor slowing down,

sexual desire) to unpleasant emotional states

‘Some nights I don’t sleep at all. Partly because of heath

flashes, but also because of unpleasant dreams.’

‘Struggling a lot with concentration and memory problems, as

well as having very little energy.’

D. Neutral words or phrases that mention the issues of

potential emotional importance which stands out from

the narrative background and refers to stressful life

events and conditions.

‘My regular GP (doctor) says that it well could be pain from the

scar tissue, e.g. and that she hopes that it isn’t a recurrence.’

(stressful life event)

‘I think a lot about cancer and my treatment.’

E. A patient-elicited repetition of a previous neutral

expression (repetitions of a neutral expression within

the same turn are not included)

1: ‘Often bothered with excessive sweating during the night,

hope it will stop when I’m done with the hormone treatment.’

2: ‘It is now over two weeks since I stopped with the hormone

treatment, but I am still suffering from excessive sweating.’

3: ‘Have to admit that the heath flashes are still bothering me.’

F. Non verbal expression of Emotion Not coded in our study. There were examples of use of

smiley icons ,;) from both patients and nurses to express

joy or humour, and use of [. . .] after patients sentences to

reflect an open question or reflection to the nurse.

G. Clear expression of an unpleasant emotion, which

occurred in the past (more than 1 month ago) or is

without time frame.

‘Then I saw a huge lump that terrified me.’

G.H. Grimsbø et al. / Patient Education and Counseling 88 (2012) 36–4338

the response that she had picked up the patients C&Cs with orwithout reference to own feelings. The C&C had to be referred todirectly in the response which could also give a reference to thetopic of the C&C. Any responses which were difficult to codewithin these three response categories were discussed betweenGHG and AF to reach consensus. Based on these discussions, AFcoded 35 of 110 responses for reliability testing. A mean CohensKappa of 0.75 (86%) was achieved (Table 1).

3. Results

3.1. Participants

Our study included patients who sent at least one e-mail messageto the oncology nurses in the OPNC service in WebChoice during thefirst 15 months of the RCT study period (half of the entire RCT studyperiod). During this time, 38 women with breast cancer and 22 menwith prostate cancer sent a total of 283 email messages. Mean agewas 52 years (SD 7.9) for women and 65 years (SD 7.6) for men, range35–77 years for both gender (Table 2). The average number of e-mailmessages per patients for the female breast cancer patients was 4.3.

For the male prostate cancer patients the average number was 5.5messages, range [1–27] for both genders. The oncology nurses sent286 e-mail messages as responses to the 283 patients e-mailmessages (mean 1.01), range [1–29]. Two of the oncology nurseswere team members in the RCT. The three other nurses answered e-mail messages as a part time job, besides their work at the hospital.The nurses were all female, mean age 37, 8 years.

3.2. Cancer patient’s expression of cues and concerns in e-mail

communication with oncology nurses

Of the 60 cancer patients who sent messages to oncology nursesin our study, 35 (58.3%) of the patients expressed at least one cue orconcern in their e-mail messages. Taken together, the patientsexpressed a total of 135 cues and/or concerns in their 283 e-mailmessages.

In total, patients’ worries were most often expressed as B cues,defined as verbal hints to hidden concerns (38.5%). The followingexcerpts are examples of B cues: ‘It doesn’t take much at all before I

haven’t got the slightest bit of energy, crying and sleeping’, ‘I am

suffering from many unpleasant side-effects and I am very interested

Page 4: Cancer patients’ expressions of emotional cues and concerns and oncology nurses’ responses, in an online patient–nurse communication service

Table 4Frequencies of cues or concerns by disease category and gender.

Breast Cancer

(female) N (%)

Prostate Cancer

(male) N (%)

Total N (%)

Cues 58 (69.9%) 44 (84.6%) 102 (75.6%)

Concerns 25 (30.1%) 8 (15.4%) 33 (24.4%)

Total 83 (100%) 52 (100%) 135 (100%)

P = .053. Chi square = 3.76.

Table 5Types of responses related to cues or concerns.

Cues N (%) Concerns N (%) Total N (%)

No response 13 (12.7%) 7 (21.2%) 20 (14.8%)

Info advice 35 (34.3%) 11 (33.3%) 46 (34.1%)

Info advice and empathic 54 (52.9%) 15 (45.5%) 69 (51.1%)

Total 102 (100%) 33 (100%) 135 (100%)

P = .475. Chi square = 1.49.

Table 2Demographic statistics of the patients.

N %

Gender

Male 22 36.7

Female 38 63.3

Marital status

Married or living with partner 53 88.4

Single 2 3.3

Divorced 5 8.3

Education

High school 20 33.3

University after high school < 4 years (Bsc) 30 50.0

University after high school > 4 years (Msc) 10 16.7

Household total yearly income

Below average: [25370–50742s] 16 26.7

Average: [50742–101484s] 34 56.7

More than average: >101484s] 10 16.7

Time since diagnosis

More than a year 25 42.4

One year or less 34 57.6

Stage of illness

First time diagnosis, no metastasis 49 81.7

Metastasis and/or recurrence 10 16.7

G.H. Grimsbø et al. / Patient Education and Counseling 88 (2012) 36–43 39

to know if they will cease.’ A close analysis of the B cues (step four inthe analysis) revealed mostly expressions of hope and uncertainty.The patients could, e.g. express hope for the future, hope for relieffrom symptoms, or more generally express hope for the possibilityto return back to a normal life, as it used to be. Examples ofexpressions of hope were: ‘Things can change over time’, ‘Maybe our

sex life will come back given enough time’, ‘nothing to do but be patient

and hope for the best.’ Uncertainty was expressed about the future,spread of disease, treatment, daily life activities and about death.Examples of expressions of uncertainty were: ‘I often wonder how

this will end’, ‘How can you know if the cancer is gone?’ ‘I am uncertain

to whether or not I am going to manage getting through the

treatment.’The second most common subcategory was concerns, defined

as clear and unambiguous expressions of an unpleasant current orrecent emotion where the emotion is explicitly verbalized (24.4%).Commonly used words to express negative emotions were: ‘Afraid’,‘dreading’, ‘apprehend’, ‘frustrated and angry’, ‘surprised’, ‘exasperat-

ed’, ‘troubled’, ‘worried’, ‘anxious’, ‘tired’, ‘uneasy’, and ‘terrified.’ Thepatients could, e.g. express direct concerns especially related tofear of relapse and worsening of the cancer, that the treatment maybe wrong or unable to cure them, concerns about symptoms/sideeffects of treatment, concerns about capacity to work, andconcerns about not being met and heard in their communicationwith health care providers.

There were significant differences between breast and prostatecancer patients in cues and concerns. In the messages from malepatients, 40.9% had expressions of cues or concerns. For the breastcancer patients who were all women, 68.4% of the e-mail messageshad cues or concerns. However, as seen in Table 3, when the

Table 3Number of cues and/or concerns related to gender.

Breast Cancer

(female) N (%)

Prostate Cancer

(male) N (%)

Total N (%)

0 CC 12 (31.6%) 13 (59.1%) 25 (41.7%)

1 CC 15 (39.5%) 2 (9.1%) 17 (28.3%)

2 CC or more (up to 27) 11 (28.9%) 7 (31.8%) 18 (30.0%)

Total 38 (100%) 22 (100%) 60 (100%)

P = .03. Chi square = 7.11.

prostate cancer patients eventually expressed cues and orconcerns, 31.8% expressed two or more C&C in their e-mailcommunication with the oncology nurses as compared to 28.9% ofmessages from breast cancer patients (p = 0.03). As a mean, malepatients expressed 1.13 cues and 0.21 concerns per message.Female patients expressed 0.98 cues and 0.42 concerns permessage.

When C&C were expressed in the e-mail messages, the prostatecancer patients expressed 84,6% as cues and only 15.4% asconcerns. Breast cancer patients on the other hand expressednearly twice as many concerns as the prostate cancer patients(30.1%) (p = 0.053) (see Table 4).

3.3. Responses

Of the 135 C&Cs expressed in the messages from patients, 115(85.2%) of the C&Cs were picked up and referred to by the oncologynurses in their e-mail responses to both breast and prostate cancerpatients. One third (34.1%) of these responses had a character ofinformational advice, however, as much as 51.1% of the responsescombined informational advice in addition to empathy. Moreover,52.9% of the cues and 45.5% of the concerns were met withinformational advice in addition to empathy. Examples from theoncology nurses expressions of empathy were, e.g.: ‘I completely

understand that you are thinking about what the future holds’, ‘It is

understandable that you became worried about the results of your

blood test’, ‘I’m sorry to hear how you were met by that doctor. I

understand that it must have been an uncomfortable experience for

you.’ These several expressions of empathy always came alongsidemore concrete informational advice to the patients about whatthey might do to manage their situation (Table 5).

4. Discussion and conclusion

4.1. Discussion

In this study of the emotional content of e-mail messages in anOPNC service as part of WebChoice, we found that more than halfof the patients expressed C&Cs in their e-mail communication withthe oncology nurses at least once in their e-mail messages. Thenurses responded to the patient’s C&Cs in 85.2% of the answers topatients. The most frequently used response type was a combinationof information giving content and an empathic recognition of theemotion expressed by the patient. Moreover, the study shows that itis feasible to use the Verona system on email communication.

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G.H. Grimsbø et al. / Patient Education and Counseling 88 (2012) 36–4340

4.1.1. Patients’ expressions of emotion in e-mail communication with

oncology nurses

Our findings, that cancer patients express emotions in their e-communication to oncology nurses, differ somewhat from earlierstudies on patient–physician e-mail communication which havefound patients to be more concerned with medical/healthinformation topics when writing to physicians [8,9]. Patientsmay not reveal their emotional issues as willingly in communica-tion with physicians, as they believe it is not a doctor’s role to helpthem with their emotional concerns [38]. This finding is in linewith a recent study by Heyn and colleagues, who found cancerpatients to be more expressive about C&C in face to faceconsultations with nurses compared to physicians [22].

Our results from the nurse-patient e-mail communication areconsistent with Roter and colleagues’ study [8] which foundpatients to communicate their emotional state to their physiciansin 14% of patients’ statements (35% of messages). However, Roteret al. did not report the extent to which emotions were alluded toor hinted at, such as is often the case in verbal communication. Thecoding of cues in written communication is our contribution to theresearch literature.

The most common category of emotional expression in ourstudy was classified as verbal hints to hidden concerns (B cues). Bcues are rather diffuse, indirect, and unspecified expressions of anunderlying emotion. Other studies of oral communication applyingthe Verona CoDES system have also found B cues to be the mostcommon category of emotional expression both among adultcancer patients and children with cancer or heart disease [21,22].Besides, Uiterhoeve and colleagues’ study of nurse–patientcommunication in cancer care detected that 70% of the patientexpressed cues were hints at worries or concerns [14].

The second common category of emotional expression in ourmaterial was the expression of explicit concerns. This finding is inline with Roter et al. [8] who found that the e-mail messages withemotional content sent from patients and their physicians wereexplicitly affective in nature, with most conveying a directexpression of worry or concern. This might indicate that the lackof non-verbal communication might make the patients more directand explicit in their e-messages to the nurses. In addition, thepatients may find it easier to express their direct concerns inwriting, hiding behind a screen. In this specific context, patientsmight become more direct when nobody’s presence can hinderthem in their expressions. These reflections can be supported by arecent study from Oguchi et al. [37] who concluded that familypresence appears to hinder patients’ expressions of cues/concernsin face to face consultations. In e-mail communications withclinicians, family presence is not able to hinder cues and concernsto be expressed since the communication is ‘private’ andasynchrone. Jansen et al. [15] found that the more ‘minimalencouragement’ nurses gave, the more information patientsrecalled. Minimal encouragement responses were, e.g. ‘Yes’,‘Hmm’, ‘Right’ or Silence. ‘Silence’ has also been found by Eideet al. [41] to encourage patients to communicate their emotions. Ifwe transfer these reflections into e-mail communication, patientsare not disturbed or guided upon the nurses verbal or non verbalreactions to their utterances when writing e-mail messages, thatcan be able to make it easier for the patients to relive theiremotions unhindered in their messages if they have a need fordoing so. One might also reflect upon that the medium of e-mailcommunication can fit the patient’s desire to control thecommunication and possibly to interact on grounds other thanthe hospital territory. By using e-mail communication the patientsare able to write down their concerns when thinking of them, andthey are able to choose the setting and timing of the emotionalcommunication, unlike visiting the sometimes hurried andstressful hospital settings [36]. Turning to earlier research, to

write about traumatic, stressful or emotional events has to a largeextent been found to result in improvements in both physical andpsychological health, in non-clinical and clinical populations [42–50]. According to this body of research, there are reasons to believethat the written email communication also have had a positiveeffect for some of the cancer patients physical and psychologicalhealth in this study.

As expected from earlier studies, we found gender differences inexpression of emotion. Breast cancer patients expressed nearlytwice as many concerns as the prostate cancer patients. Theseresults are consistent with earlier studies on gender differences inonline communication [24,25]. In our study, we do not know ifthese differences are related to gender only, or to a combination ofgender, cancer diagnosis or age, as the breast cancer patients weresignificantly younger than the male prostate cancer patients.

Contrary to earlier research, our study shows that despite thefact that men less often expressed cues and concerns than women,when they eventually did, they expressed cues and concerns twiceas often or even more often than women. Fitch and colleagues [26]have found that having erection problems was the most commonsource of disease specific distress for prostate cancer patients. In astudy of the same sample, we found worries related to erection andimpotence to be the most common theme for prostate cancerpatients, in addition to incontinence and urine retention problems[12]. However, despite that prostate cancer patients struggle withsexual functioning, to talk about it can be experienced as ‘hard’ and‘embarrassing’ [27]. Studies have also shown that men withprostate cancer identify sexuality as their most important unmetinformational need from health care providers [28]. Our resultsthen might reflect that the prostate cancer patients found the e-mail communication, where they could anonymously communi-cate with the nurses, e.g. as a possible venue to express theirproblems and concerns related to sexuality.

As many as 41.7% (25) of the patients did not express any C&C intheir e-mail communication with the oncology nurses. Onepotential interpretation is that these patients had close socialnetwork relations or a good relationship to their physicians, whichwould fulfil their information needs. When compared to priorstudies on emotional expressions in face to face interactions, ourfindings on the number of emotional utterances are somewhat inthe middle. Heaven found that overall, 60% of hospice patients’concerns remained hidden. Concerns about the future, appearanceand loss of independence were withheld more than 80% of the time[6]. In Jansen’s investigation on older cancer patients informationaland emotional cues, only 10.5% of the patients did not express anyemotional cues and 1.0% did not express any cues at all [15]. Ourresult might indicate that to express emotions in e-mailcommunication is suitable for some patients, but not for all.However, based on the findings of the current study, e-mailcommunication does not seem to contain less emotional contentthan face to face communication.

4.1.2. The nurses’ responses to patients’ emotional expressions

Despite the fact that the oncology nurses prior to the study had noformal training specifically directed to prime their responses topatients’ emotions, we found that the nurses spontaneously pickedup and responded to 85.2% of the patients C&Cs. Compared to otherstudies which, e.g. have examined oncology nurses concernresponding behaviour in face to face interactions with patients,the response rates to cues and concerns in our study indicate asatisfactory sensitivity to patient emotions in the way nursesrespond in e-mail communication. For instance, Heaven & Maguire’sstudy of disclosure of concerns by hospice patients and theiridentification by nurses, found that only 40% of the patients’concerns were picked up and documented by the nurses, and lessthen 20% of patients’ concerns were identified appropriately [6].

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Uiterhoeve and colleagues found in their study of nurse patientcommunication in cancer care, that more than half of the patients’cues were responded to with distancing behaviours [14].

In Eide et al.’s study of fibromyalgia patients, nurses respondedwith implicit recognition, mostly using minimal encouragement to75% of emotional expressions, with explicit recognition to 13% ofexpressions, while 12% of the responses were not within theperspective of the patient. Nurses responded with a higher degreeof explicit recognition to patients’ explicit negative emotionalexpressions [39].

That our study showed a higher and more satisfactory sensitivityto patient emotions in e-mail communication compared to priorstudies, might have to do with the e-mail communication makingthe C&Cs more explicitly expressed by the patients when they haveto write their messages instead of talking, and that it is easier for thenurses to discover and pick up any form of emotional C&Cs that arebeing expressed in a textual context. The written email messagesfrom patients with emotional content are also harder to ‘overlook’ or‘ignore’ since the emotion is outspoken and ‘visible on the screen.’ Itdoes not disappear, as the more fleeting face to face moments ofcommunication. The nurses responsibility for responding to thepatients emotional distress might in this way become clear. Besides,in this communication context, the aspect of time is crucial. Timepressure might be larger in face to face consultations, limiting boththe number of C&C and the number of appropriate responses.

In e-mail communication, the oncology nurses are able to re-read the patients e-mail messages over again to be able to capturetheir questions, worries and concerns before answering them. Thismight have been a central aspect for the nurses’ sensitivity topatients’ emotions in our study.

It should also be mentioned that since the hints to hiddenemotions (B cues) were most frequently expressed by the patients,the oncology nurses in our study managed to pick up and respondto a high degree of diffuse emotional utterances from the patients,often with an explicitly emphatic remark in their e-mailcommunication. Earlier studies have shown that cues are difficultto detect and often missed by the doctor in face to faceconsultations [29]. Our results can reflect that e-mail communica-tion is able to make it easier for healthcare providers to pick up andrespond to cues. The written language can make the cues andconcerns more visible, and maybe explain why the communicationfrom the nurses was characterised by a high degree of empathicremarks. Turning to research who has explored empathy expressedin face to face interactions between patients and physicians, beingempathic and warm in the communication with patients decreasesanxiety [51], strengthens the aspects of care [52] and is associatedwith greater patient satisfaction, increased self-efficacy andreduced emotional distress [53]. Supported by this research, thereare reasons to believe that the patients in our study also couldexperience some of these positive effects, even though the purposeof this study was not to measure these outcomes.

In the current study the e-mail communication was an additionto the care as usual. Despite our promising results concerningpatients’ expressions of C&C and the nurses’ responses, e-mailcommunication cannot replace usual care. As we see, 41.7% of thepatients did not express any cues or concerns in their e-mailcommunication. This may reflect that not all patients arecomfortable with this medium of communication. Patients canalso find the communication with the nurses too general, and nottailored to their unique illness experiences. Patients also desire forhuman contact and face to face communication. A computer cannever replace that, but can be a supplement to usual care [40].

4.1.3. The use of the VR-CoDES on an e-mail communication dataset

The strength of our study is our use of a consensus-based codingsystem to examine the patients’ expressions of cues and concerns

and the nurses’ responses in e-mail communication. Despite thatthe VR-CoDES are developed to analyse and examine face to faceinteractions, we found the coding system satisfactory to exploreand code C&C expressed by the patients in their e-mail messages.However, using a coding system based on face to face communi-cation to code e-mail messages might lead to an underestimationof the number of cues and concerns coded. When working withtextual messages, there are bigger risks for misunderstandings andmisinterpretation of the textual messages. The coders mightinterpret and attach different meanings to a written e-mailmessage than watching or looking at face to face consultations.This might also have to do with the non-verbal communicationthat is being missed in the e-mail messages. Non-verbalcommunication is able to understate cues and concerns, andmaking them more clear and concise and probably easier to code.

In regard to the use of the VR CoDES-P on the oncology nursesresponses, some challenges were uncovered. In the first phase weused the VR-CoDES-P manual to code each of the nurses’ responsesto each of the patients’ expressed cues and concerns. We thenrecognized that many of the oncology nurses responses had thenature of informative advice, and some of them also had elementsof emphatic communication and tone when we read the oncologynurses e-mail answers as whole messages. We therefore found ituseful to recode the nurses’ responses into the three newcategories as mentioned in stage five of the analysis.

Besides the challenges with the coding of responses, there wereno ‘turns’ in the communication. When we worked with thereference coding, we saw that for the most part, the coders haddivided the patients’ e-mail messages and coded several C&Cwithin the same messages. There were however, a few examples ofone coder merging several expressions of different C&C in the textsto count as one cue or concern, while the reference coder on thesame e-mail message had divided the patients e-mail message intoseveral sections and coded several expressions of cues and orconcerns. We suggest that if the VR-CoDES are to be used on e-mailcommunication analyses in the future, one has to take a closer lookinto the definition of ‘turn’ in the manual. We suggest that a rule forcoding on e-mail messages should be that if there are severaldifferent expressions of cues and/or concerns within the same e-mail message, all the cues and concerns are to be coded separatelyand not merged together as one expression of a cue or concern.

4.2. Limitations

The challenges with the response coding, as mentioned in theprevious section, can be a limitation of this study, in addition to arelatively small sample size. Also, the current e-mail communica-tion with the five nurses was not integrated into routine clinicalcare and the patients did not see the nurses face-to-face. This mighthave resulted in a different relationship compared to e-mailcommunication with nurses who were involved in the clinical carefor the patient and with whom the patient also had face-to-faceconsultations. One might also reflect upon the fact that prostatecancer patients might be sharing fewer concerns about impotenceif they had met the nurses face to face.

Furthermore, it is difficult to compare cues and concerns ofpatients with two different cancer diseases, especially consideringtheir gender specific aspects, different treatment options and lifeexpectancies. On the other hand, a heterogeneous sampleincreases external validity. However, the results from this studymust be seen in light of these limitations.

4.3. Conclusion

Cancer patients express many C&Cs in e-communications withoncology nurses. The oncology nurses in our study demonstrated

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satisfactory sensitivity to patient emotions in their e-mailresponses to the patients, often with an explicitly emphaticremark in their e-mail communication. The study suggests thatpatients can experience positive effects by writing about theiremotions in e-mail communication supported by the Pennebakertradition. At the same time, the study reflects that the oncologynurses showed sensitivity and empathy in their responses topatients. Supported by prior research, we believe that e-mailresponses with these qualities can have a positive effect onpatients’ emotional distress.

However, 41.7% of the patients in our study did not express anycues or concerns in their e-mail communication to the oncologynurses. This reflects that communicating e-mail messages withemotional content is suitable for many patients to relive theiremotional distress, but not for all.

4.4. Practice implications

Offering cancer patients e-mail communication with oncologynurses can be a promising and feasible supplement to usual care toaddress and relieve many cancer patients’ concerns and emotionaldistress during illness and recovery. It may give the patient anopportunity to control the communication by choosing the settingand timing of their communication of emotions, unlike visiting thesometimes stressful hospital setting. Offering cancer patientspossibilities for e-mail communication with nurses may have thepotential to support and strengthen the relationship and partner-ship between patients and nurses in the future. For future studieswe suggest asking patients and nurses whether they felt more ableto discuss emotions via the e-mail than in a normal consultation.

Conflict of interest

Hereby we disclaim any actual or potential conflict of interestincluding any financial, personal, or other relationship with peopleor organizations that could inappropriately influence our work.

Funding

This study was funded by the Norwegian Cancer Society (NCS)and forms part of a doctoral thesis to be submitted to theDepartment of Medicine, University of Oslo.

Acknowledgements

The authors would like to thank all the patients and nurses whoparticipated in this research. The authors also gratefully acknowl-edge and thank Knut Ørnes, Hanne Lise Eikeland, Torjus Holla andSigurd Christoffer Rolseth who coded the data material.

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