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Facing possible illness detected through screening—Experiences of healthy women with pathological cervical smears
ARTICLE IN PRESS European Journal of Oncology Nursing (2007) 11, 417–423
Available at www.sciencedirect.com
journal homepage: www.elsevier.com/locate/ejon
Facing possible illness detected through screening—Experiences of healthy women with pathological cervical smears Lise Hounsgaarda,, Lone Kjeld Petersenb, Birthe D. Pedersenc a
Research Unit of Nursing, Faculty of Health Sciences, Institute of Clinical Research, University of Southern Denmark, J.B. Winsloews Vej 9, DK-Odense, Denmark b Department of Obstetrics and Gynaecology, Skejby Hospital, University Hospital of Aarhus, Aarhus, Denmark c Department of Nursing Science, Institute of Public Health, University of Aarhus, Denmark
KEYWORDS Cancer screening; Illness indicative disease; Pre-cancer; Nursing; Women’s perceptions
Summary The aim of this study is to gain knowledge about women’s perceptions of illness based on their abnormal PAP smears, following screening for cervical cancer. The study uses a phenomenological, hermeneutic approach inspired by Ricoeur’s theory of interpretation. Twelve women, aged between 23 and 59 years, were consecutively selected and then followed by participant observation during their examinations and treatment in hospital. They were interviewed on entering the study, a week following their surgery, and 6 months later. The material collected was analysed through a dialectic process consisting of a facevalue review of participant experiences (naive reading), structural analysis and, critical interpretation of what it means to be potentially ill. The women were unprepared to find that their screening results showed abnormal cells, indicative of incipient genital cancer. They were frustrated by the results as they had not experienced any symptoms and felt well, despite being diagnosed with a potential disease. Being diagnosed with abnormal cells caused the participants to feel anxious. Their anxiety had subsided 6 months after the cells had been removed. For those who did not require treatment, anxiety flared up with recurrent check-ups. The bio-medical differentiation between pre-stage and actual cancer provided no comfort to the participants, who continued to see themselves as having early stage cancer. & 2007 Published by Elsevier Ltd. Zusammenfassung Das Ziel dieser Studie bestand darin, Erkenntnisse u ¨ber die Krankheitswahrnehmung bei Frauen zur gewinnen, bei denen im Rahmen eines Zervixkarzinom-Screenings der PAPAbstrich positiv ausfa ¨llt. Fu ¨r die Studie wurde ein pha ¨nomenologischer hermeneutischer Ansatz gewa ¨hlt, der sich an der Theorie der Interpretation nach Ricoeur orientiert. Zwo ¨lf konsekutiv rekrutierte Patientinnen im Alter zwischen 23 und 59 Jahren wurden wa ¨hrend ihrer Untersuchungen und Behandlungen im Krankenhaus beobachtet (TeilnehmerBeobachtung). Interviews der Probandinnen fanden bei Aufnahme in die Studie, eine Woche nach dem chirurgischen Eingriff sowie sechs Monate postoperativ statt. Die Analyse
Corresponding author. Tel.: +45 6550 4317; fax: +45 6550 3682.
E-mail address: [email protected] (L. Hounsgaard). 1462-3889/$ - see front matter & 2007 Published by Elsevier Ltd. doi:10.1016/j.ejon.2007.04.005
ARTICLE IN PRESS 418
L. Hounsgaard et al. der erhobenen Daten erfolgte in einem dialektischen Prozess einschließlich eines Facevalue-Reviews der Erfahrungen der Teilnehmerinnen (naives Lesen), einer Strukturanalyse sowie einer kritischen Interpretation dessen, was es bedeutet, mo ¨glicherweise krank zu sein. Die Probandinnen waren nicht auf die Nachricht vorbereitet, dass beim Screening anomale Zellen gefunden wurden, die ein beginnendes Zervixkarzinom anzeigen. Sie waren u ¨ber die Screening-Ergebnisse erschrocken, da bei ihnen noch keinerlei Symptome aufgetreten waren und sie sich trotz der festgestellten mo ¨glichen Erkrankung wohlfu ¨hlten. Der Nachweis von anomalen Zellen hatte zur Folge, dass die Probandinnen beunruhigt waren. Diese Unruhe war sechs Monate nach Entfernung der anomalen Zellen ¨ngste bei zuru ¨ckgegangen. Bei Probandinnen, die keiner Therapie bedurften, traten die A jeder Kontrolluntersuchung erneut auf. Die medizinisch-fachliche Unterscheidung zwischen Krebs im Vorstadium und etabliertem Krebs konnte die Probandinnen nicht beruhigen: Diese waren weiterhin u ¨berzeugt, dass sie an Krebs im Fru ¨hstadium litten. & 2007 Published by Elsevier Ltd.
Introduction Clinicians are encouraged to gain more knowledge about the psychosocial impact on patients who are informed of positive results following screening (Det Etiske Ra ˚d (The Ethics Council), 1999). New screening programmes, e.g. for breast, ovarian and colon cancer, will soon be launched or are already taking place in some countries. These new programmes will increasingly expose health professionals to healthy patients undergoing screening for suspected pre- or early stage cancer. From a clinical perspective, having abnormal cells is not considered as critical (Olesen, 1997). However, the patient’s understanding of a disease often differs from that of health professionals (Lunde, 1990). A patient said: ‘‘They know it’s common (the health professionals); they know it’s a small thing—to you it’s the end of the world’’ (Posner and Vessey, 1988). Having been detected with abnormal cells can significantly preoccupy a woman’s daily life. It is often experienced as a threatening condition, and some women interpret the situation as actually having cancer (Posner and Vessey, 1988). Concerns about cancer may be due to a lack of understanding about early disease detection practices and what a pre-cancerous stage means (Lerman et al., 1991). Even after full treatment for abnormal cells, a proportion of the patients may continue to feel threatened and concerned about relapses. Their anxiety remained unchanged despite information relay from professional nurses about the potential disease (Peters et al., 1999). They experienced changes in self-image, sexuality and sleeping patterns. Concern about infecting others during sexual intercourse impacted their desire for sex, and consequently decreased their sexual activity (Campion et al., 1988). Randomized studies, using structured interviews and scale measurements before and after investigation and treatment of screened women, show that results from the screening trigger psychological, psychosocial and psychosexual consequences (Posner and Vessey, 1988; Lerman et al., 1991; Campion et al., 1988; Reelick et al., 1984). A study on the psychological side-effects of the mass screening on cervical cancer concludes, that these psychosocial consequences are not serious or long-lasting (Reelick et al., 1984).
In contrast, a study that used a qualitative interview technique to focus on the screened women’s experienced social and cultural understanding of being detected with abnormal cells shows a considerable impact on the participants’ lives (Peters et al., 1999). In this latter study, the women presented with different degrees of psychosocial consequences that took the form of physical, emotional and social side-effects in daily life. These side-effects usually are manifested as, for example, sleeping disorders, changes in appetite, difficulties in accomplishing daily tasks, workrelated issues, or low participation in regular recreational activities. The emotional impact translated into feelings of unhappiness, depression, anxiety, panic, nervousness, or feeling in a state of suspension or under pressure. The social side-effects on the women included hiding the issue from their respective families and friends, placing the blame on others, and withdrawing from contact with their respective social networks (Peters et al., 1999). There appears to be a lack of knowledge about how women understand, what being detected with abnormal cells means or how this incidence can impact on their lives.
Aim The aim of this study is to gain knowledge about women’s perceptions of illness, based on detected abnormal PAP smears, following screening for cervical cancer. This study looks at the impact on women who learn that their cervical cancer screening results show abnormal cells and how they understand the situation. The study was carried out in collaboration with the Department of Gynaecology and Obstetrics at Skejby Hospital, The University Hospital of Aarhus in Denmark.
Material and method This study uses a phenomenological, hermeneutic approach inspired by the French philosopher, Ricoeur’s, theory of interpretation (Ricoeur, 1979; Pedersen, 1999; Hounsgaard, 2004). Furthermore, the study is based on socio-anthropological fieldwork and uses interview and participant observation techniques with healthy women who participates in a screening programme for cervical cancer.
ARTICLE IN PRESS Experiences of healthy women with pathological cervical smears The fieldwork facilitate interpretation of what the participants are experiencing and allow the professionals in the study to respond by providing the screened participants with a better understanding of any consequences to their condition.
Participants The longitudinal design of any qualitative research holds a risk for data overload, as a substantial amount of information is generated by returning contact with the same participants. It is advisable, therefore, to limit the number of participants in qualitative studies (Morse, 1993). In this study, 12 participants generated sufficient data for analysis and to satisfy the aim of the study. The participants were diagnosed with a potential disease based on the findings of abnormal cells in their cervical smear tests. The inclusion criteria for the study were:
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Data collection The fieldwork was carried out over a 2-year period from December 1999 to December 2002. The length of time each of the 12 participants was implicated in the study ranged from 7 to 15 months (average: 10.5 months). The longitudinal design is detailed in Tables 1 and 2. The tables shows that the participants were observed throughout the course of their illness, including during any additional examinations and required hospital treatments. They were also interviewed in their own homes. Contact with the participants was made at three major points during the study. The initial contact was made following detection of the abnormal cells; during the first hospital appointment; and 6 months following their surgery to remove the abnormal cells (for those requiring treatment) or 6 months after all rolling check-ups at the hospital (for those not requiring treatment).
Participants requiring treatment
women, between 23 and 59 years of age (the established
age range of the Danish screening programme); no previous experience with a serious disease; and diagnosis of moderate to severe cellular abnormalities.
The 12 women, who met the inclusion criteria, were consecutively included by means of referrals from their respective GPs to the hospital’s gynaecology department. The average age of the women was 31.75 years.
Table 1
Seven participants required treatment (see Table 1 for contact types and series of examinations/treatments undergone). Initial contact, which took the form of interviews, was made on admission to the hospital’s gynaecology department, for further investigation. The women were followed by participant observation on several occasions at the hospital, including: during the first examination; during a preparatory interview on the day of the operation and prior to surgery; and during an appointment when test
Types, time-lengths and time-points of contact for participants requiring treatment.
Types Ethnogr. Participant Phone Participant Participant Ethnogr. Participant Participant Phone Ethnogr. of interview obs. conversation obs. obs. interview obs. obs. conversation interview contact Time4 weeks 2 weeks 2 weeks 2 weeks 2 weeks 2 weeks 2 mdr 4 weeks 2 weeks lengths Inclusion Timepoints of contact
First ex. and tests
Testresults
Pre-ex and tests
Operation
On sick leave
Testresults Test at GP
Testresults
Closing
ethnogr. ¼ ethnographic; obs. ¼ observations; ex. ¼ examination
Table 2
Types of contact Timelengths Timepoints of contact
Types, time-lengths and time-points of contact for participants not requiring treatment. A Ethnogr. interview 4 weeks
B Participant Phone obs. conversation 2 weeks 4–6 mths
K Participant Phone obs. conversation 2 weeks 4–6 mths
L-2 Participant Phone obs. conversation 2 weeks 2 weeks
M/N Ethnogr. interview
Inclusion
First ex. and tests
Second ex. Testresults and results
Third ex. Testresults and results
Closing
Testresults
ethnogr. ¼ ethnographic; obs. ¼ observations; ex. ¼ examination
ARTICLE IN PRESS 420 results, following the operation, were given to them. In addition, the participant observer was present at the followup appointment with the GP, 6 months after hospital discharge. Finally, participant observation took place while participants were in the hospital waiting room, with informal conversations that lasted between 10 and 90 min. A family member accompanied the majority of the participants during the first appointment. Information on the consequences of the test results, gathered from telephone conversations with the participants, was also used to analyse, for future reference, the impact of receiving such diagnoses. The length of the initial interviews ranged from 25 to 78 min (average: 44 min). A second interview took place 1 week after surgery, while the participants were on sick leave from work. Each of these interviews had a duration between 38 and 58 min (average: 46 min). The final interview took place 6 months after hospital discharge and lasted between 20 and 90 min (average: 47 min).
Participants not requiring treatment Five participants did not require treatment but were monitored by means of PAP tests and tissue samples taken at the hospital, at intervals of 4–6 months. Participation by this group started and finished by means of an interview, as depicted in Table 2. The time used for these interviews did not differ from the group requiring treatment. The participants were contacted by telephone regarding their test results. As there were recurrent check-ups, there was more contact made with the participants not requiring treatment by the field-workers in the hospital, and more telephone contact than with the participants requiring treatment. The time spent in the waiting room was similar for all of the study participants. A semi-structured interview guide helped the interviewer and the participant to keep centred on the experience of being detected with abnormal cells. The interviews were audio-taped.
Data processing The audio-taped interviews were transferred to the Qualitative Media Analyzer (QMA) (Skou, 2001), a sound-based data programme that facilitates analysis of sound data without transcription (Hounsgaard, 2004). Field notes from participant observations in the waiting room, at appointments, and following surgery, were taped immediately following these events. The field notes were supported by audio-tape recording during the appointments. The collected data was stored in the QMA. The data comprised: 37 h of sound-based data from 28 interviews; 12 h of sound-based data from participant observation during 31 interviews; sound-based field notes from 5 surgical procedures; and sound-based field notes from 25 telephone conversations at the time participants received their test results.
Analysis Using a method inspired by Ricoeur, the data were analysed on three levels: naive reading, structured analysis and,
L. Hounsgaard et al. critical interpretation (Ricoeur, 1979; Pedersen, 1999; Hounsgaard, 2004).
Naive reading According to Ricoeur, the naive reading requires that the researcher read the text using a phenomenological approach, i.e. remaining non-judgemental and reading the text at face value. Naive reading helps to obtain a holistic understanding of the meaning content. All of the data (i.e. observational data, field notes and interviews) were processed thoroughly by re-reading and re-hearing them repeatedly. This helped to grasp the meaning content (what was said) about the experiences discussed during field work, and led to initial steps in understanding the significance of how the women perceived their potential illness.
Structural analysis Structural analysis aims to clarify any dialectics between the holistic understanding of the naive readings and explanation of what the texts mean prior to deeper critical interpretation. Structural analysis is a shift from what the text says to what it actually means, first by describing units of meaning (what was said), then by identifying and formulating units of significance (what the text means) and finally to develop themes for critical interpretation.
Critical interpretation The themes identified by the structural analysis are interpreted and discussed during critical interpretation. Through this process, interpretation of the themes reverts to the text in a hermeneutic spiral that reflects a dialectic process between explanation and comprehension. During the critical interpretation and discussion, it is possible to delve deeper into the themes and to facilitate the development of a new understanding and new knowledge, in a shift from the superficial to more in-depth interpretation.
Ethical considerations The Committee for Scientific Ethics approved the study. Participation in the study was voluntary and a written informed consent was required of the participants prior to the initial interviews. It was underscored that they could withdraw from participating in the study, at their own will, at any time. Anonymity was guaranteed by ensuring strict confidentiality of the audiotapes and field notes related to the study.
Results Phases and emerging themes Each of the 12 participants experienced a unique course of events. These events could be categorized into three phases: a pre-diagnostic, diagnostic and post-diagnostic phase. The women’s statements referred to each of these phases, and highlighted aspects that were simultaneously
ARTICLE IN PRESS Experiences of healthy women with pathological cervical smears
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Table 3 Overview of results of structural analysis with derived themes, examples of units of meaning as quotations taken from the text from the naı¨ve reading. Phase
Units of meaning (what is said)
Theme and units of significance (what is being spoken about)
The prediagnostic phase
Being healthy and potentially ill
‘‘It took me completely by surprise’’ ‘‘A warning of something serious’’ ‘‘you’re sick when you’ve got a temperature’’ ‘‘I feel well and maybe I’m ill’’ ‘‘If it isn’t cancer, what is it?’’ ‘‘I have dark thoughts’’ ‘‘I went into a blind panic’’ ‘‘I’m not the sort who gets cancer’’ ‘‘Suddenly, it isn’t so scary any more’’
Screening result form Between healthy and ill Potentially ill Significant life phenomena Understanding in everyday life
The diagnostic phase
Being a patient and suffering
‘‘I’ve never been in hospital ‘‘ ‘‘It’s like a production line’’ ‘‘The fear that there was something wrong made me ill’’, ‘‘It’s a big system to have confidence in’’ ‘‘I don’t want to be cremated or deep-frozen ‘‘
Patient role Illness and suffering in the group requiring surgery Illness and suffering in the group having recurrent check-ups
‘‘I just don’t want to think about it’’ The postdiagnostic phase
Being off work and suffering
‘‘I’m afraid of getting bored’’, ‘‘I was surprised I was so tired’’ ‘‘Suddenly your daily routine has been turned upside down’’, ‘‘My boyfriend is running the house’’ ‘‘I read something worrying. The cell changes had penetrated the spinal cord’’ ‘‘It’s the little things that usually irritate’’
seen as frustrating, significant and difficult to interpret. Table 3 presents meaning content at all three phases, in the form of selected quotations from the participants. The prediagnostic phase covered that period of the potential illness course (i.e. when the women were made aware of their screening results to the time of clinical follow-up in the outpatient department, where colposcopies and histological tissue samples confirmed their diagnoses). Results of the tissue samples, made available during the diagnostic phase, determined the course of illness, that then proceeded in one of two directions, i.e. a curative course, including surgery to remove abnormal cells by cervical conization, followed by a period of recuperation (Table 1); or a control check-up period, involving recurrent testing (Table 2). The postdiagnostic phase included the period following surgery, control check-ups and discharge from hospital. In general, the participants expressed frustration in being healthy but simultaneously being potentially ill. The way in which the screening result was communicated to them, impacted the conduct of their daily lives. An important theme, being a patient and suffering during meetings with
On sick leave The role of illness The meaning of suffering
the healthcare professionals, when receiving a diagnosis of abnormal cells and when undergoing surgery for this at the hospital, surfaced. A healthy person with abnormal cells can experience being labelled as a patient when subjected to the framework and routines of the hospital. This is true for participants requiring treatment as well as those who does not requiring treatment. Suffering and finding significance in having a potential illness, was another emanating theme for those participants who reflected on or lived through the experience while on sick leave and during the 6 months up to the follow-up appointment with the GP.
Being healthy and potentially ill In the pre-diagnostic phase, and more specifically when shown their screening results, the study shows that the women were unprepared to do anything other than to confirm that they felt well and healthy. Their understanding of illness was characterised by the idea that a healthy lifestyle will protect against serious illness. There was,
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therefore, some uncertainty in the understanding of what illness meant, when one feels healthy and symptom free but simultaneously is diagnosed as potentially ill. A series of understandings arose, ranging from a condition that could be changed by surgery to a more existential experience that impacts the participant’s cultural and social circumstances. The reaction experienced by the women included a diffuse anxiety that filled their lonely moments, i.e. existential thoughts about dying, because the fatal consequences of having abnormal cells filled their minds as did the realization that life is not eternal. Speculations about having early stage cancer left the women unempowered to act. Instead, they were numbed by speculations and were unable to concentrate during the period between being examined and receiving the results of their tissue samples. Actions taken by the health professionals during the pre-diagnostic phase focused on helping the women to grasp their situation and to understand it by drawing parallels with comparable illness experiences in their network of family and friends.
Being unable to work and suffering
Being a patient and suffering
This study had an exploratory aim. Had the aim been to create a general understanding of illness based only on the result of a positive screening, it would have been an important limitation that could have restricted the study to the perspective of 12 women confronting a potential illness. The study focused on how participants understood their illness. Using the healthcare professional’s biomedical understanding of disease as a counterweight to the screened participants’ perceptions of illness could enrich the discussion regarding the conduct of screening results in future research and clinical nursing practice.
During the diagnostic phase, the patients requested information about any consequences that being potentially ill could have on their daily lives. Instead, they found themselves assuming the role of patients, where physicians in the outpatient department seemed more focused on extracting high quality tissue samples for testing than being respondent to their concerns. This indifference caused the women to become more withdrawn and hesitant to raise questions with the health professionals. The language used by the professionals during the information also had an impact on the women. Their use of technical terms while maintaining a friendly demeanour raised the level of uncertainty of the participants. Despite the fact that the gynaecological examination did not cause much physical discomfort, the women were anxious that the physician might find something seriously wrong. They also felt awkward being half-dressed in front of several observers. During the surgical period, the women were comforted by explanations provided to them about the use of anaesthesia and about the operation itself, and they were guaranteed that they would survive the operation and would wake up from the anaesthetic. While waking out of the anaesthesia, it proved important that the health care providers took time to be with the patient and to come into dialogue with her, despite the fact that this time was limited to only a few minutes. How the women estimated the personnel’s expertise had an impact on how they experienced their outpatient surgery. In anticipation of each recurrent control check-up, it was characteristic of the women to experience poor sleep patterns and diminished ability to concentrate up to the time when new tissue samples were taken and they were informed of the results. The recurrent check-ups with new tissue samples and new periods of waiting for results reactivated the participants’ anxiety. The women’s understanding of illness changed only during the control check-up period, as they gained a broader clinical insight into what abnormal cells meant and in perspective, they could see earlier comparable experiences with illnesses amongst family members and friends.
In the post-diagnostic phase, the women’s understanding of illness moved from chaos to clarity. The women found their recuperation period very significant. They used the period to reflect on their current situations and to decide how they would move forward. New perspectives on life opened for them and gave them renewed energy, despite their speculations about having possible signs of early cancer. Their fear of dying was exchanged for a joy in living and the opportunity presented itself for an improved and more nuanced self-understanding. Finding purpose in suffering is a personal process that one experiences with the support and empathy of family members, one’s social network and not least health care professionals.
Discussion Methodological considerations
Discussion on the findings The aim of this study was to gain knowledge about women’s perceptions of illness based on experiences of participants with abnormal cells after screening for cervical cancer. The study shows that the women went through a process where the understanding of illness developed and changed from the moment the diagnosis was communicated to them up to 6 months following completion of their examinations and treatment at the hospital. Similarly, Reelick et al. (1984), in a study on the psychosocial effects of screening, found that being informed of test results showing abnormal cells can be perceived as life-threatening and can trigger existential thoughts about one’s mortality. The condition causes anxiety and restlessness, followed by dramatic changes in a person’s social and cultural daily life. Other authors (Lerman et al., 1991; Peters et al., 1999; Campion et al., 1988) underpin their findings of these psychosocial effects with questionnaires and scale measurements of the anxiety experienced. Effects arise. They are not serious or long lasting. These studies do not indicate that the psychosocial effects are triggered by a personal growth, as is the case in this study. The participants of this study found a meaning in their illness rather than seeing it as simply an isolated event. This meaning promoted existential growth during which anxiety caused by the illness transformed into a joy in living. Like other research results, the study highlights the fact that the health professional’s understanding of illness is
ARTICLE IN PRESS Experiences of healthy women with pathological cervical smears often different from that of the patient (Lunde, 1990). Kleinman’s definitions of illness (suffering) and disease underscore this difference (Kleinman, 1980). According to Kleinman, illness is the channel through which patients, families and communities learn to interpret and communicate symptoms. The term ‘‘potentially ill’’ will be understood according to each person’s background and socioeconomic circumstances as the term depends on one’s earlier experiences of illness and life experiences. Disease means illness to the health care provider, who thinks and functions within the framework of a traditional health care system. In the Danish health care system, health professionals often take action based on objective and measurable physical or psychological changes that can be classified within an established diagnostic system. Illness and disease partially overlap (Skou, 2001). A stringent bio-medical divide between seeing cell changes as a pre-stage to cancer or cancer itself cannot be understood by lay-people being screened for the disease. A generally unclear use of the term cancer and abnormal cells by the health care system can lead to these terms being understood interchangeably. That is why people who are screened face difficulties in understanding the difference between a pre-stage cancer and actually having the disease and cause them to become anxious about possibly being seriously ill. This reasoning is in agreement with the findings of an Australian study on women’s understanding of the pre-cancer concept (Gregory and McKie, 1992).
Conclusion The study shows that screening participants are unprepared for their results to reveal abnormal cells. It is a significant event to have a potential illness detected because existential thoughts arise about one’s own mortality. Although the incident sets in motion the opportunity for personal growth and development, it carries in its wake, both anxiety and uncertainty in daily life. The layman’s understanding of the illness is that the screening result is a sign of the beginnings of cancer in the womb. This results in frustration at being symptom-free and feeling well but simultaneously being diagnosed as potentially ill. The biomedical distinctions between pre-stage cancer and cancer mean little to screened participants. For them it is difficult to understand that cell changes are anything other than a life-threatening illness. The study can be seen as a contribution to health policy and opens a debate about screening programmes. Insight into what it means to be in a position of having a potential illness following participation in screening, may contribute to our knowledge on the significance of the screening outcomes on a person’s daily life. This knowledge is important to both policy-makers and healthcare professionals in the debate about the psychosocial consequences of participating in screening. It may also contribute to the
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knowledge of clinical nurses regarding special care and attention needed for people undergoing screening.
Acknowledgements Funding: This study was supported by grants from the Department of Obstetrics and Gynaecology, Skejby Hospital, the University Hospital of Aarhus, Århus County Research Initiative, The Professional Union of Teaching Nurses, the Nursing Research Foundation, the Danish Nurses’ Organization, The Lundbeck Foundation and the Novo Nordic Foundation.
References Campion, M.J., et al., 1988. Psychosexual trauma caused by an abnormal cervical smear. British Journal of Obstetrics and Gynaecology 95, 175–181. Det Etiske Ra ˚d (The Ethics Council), 1999. Screening—An Expose ´. Det Etiske Ra ˚d (The Ethics Council), Copenhagen. Gregory, S., McKie, L., 1992. Researching cervical cancer: compromises, practices and beliefs. Journal of Advances in Health and Nursing Care 1, 73–84. Hounsgaard, L., 2004. Potentiel sygdom sætter spor. Kvinders oplevelse af sygdom i et forløb med celleforandringer efter screening for livmoderhalskræft. (Potential illness has consequences. Women’s understanding of illness when diagnosed with abnormal cells following screening for cervical cancer.) Ph.D. Thesis, Faculty of Health Sciences, Department of Nursing Science, University of Aarhus. Kleinman, A., 1980. Patients and Healers in the Context of Culture. University of California Press, USA. Lerman, C., et al., 1991. Adverse psychological consequences of positive cytological cervical screening. American Journal of Obstetric and Gynecology 165, 658–662. Lunde, I.M., 1990. Patientens egenvurdering: et medicinsk perspektivskifte (The patient’s self-assessment: a change in medical perspective). FADL. Morse, J., 1993. Drowning in data. Qualitative Health Research (3), 267–269. Olesen, F., 1997. Screening for cervical cancer. Ma ˚nedsskrift for Praktisk Lægegerning. Monthly Journal for Clinical Medicine., 1289–1299. Pedersen, B.D., 1999. Nursing practice. Language and recognition. Ph.D. Thesis, Health Sciences Faculty, Aarhus University, Aarhus. Peters, T., et al., 1999. Anxiety among women with mild dyskaryosis: a randomized trial of an educational intervention. British Journal of General Practice, 348–352. Posner, T., Vessey, M., 1988. Prevention and Cervical Cancer: The Patients View. King Edwards Hospital Fund for London. Reelick, N.F., et al., 1984. Psychological side-effects of mass screening on cervical cancer. Social Science and Medicine 18 (12), 1089–1093. Ricoeur, P., 1979. Interpretive Theory. Vinthers Publishing House, Copenhagen. Skou, C.V., 2001. The Qualitative Media Analyzer Information System. Aarhus.
Available at www.sciencedirect.com
journal homepage: www.elsevier.com/locate/ejon
Facing possible illness detected through screening—Experiences of healthy women with pathological cervical smears Lise Hounsgaarda,, Lone Kjeld Petersenb, Birthe D. Pedersenc a
Research Unit of Nursing, Faculty of Health Sciences, Institute of Clinical Research, University of Southern Denmark, J.B. Winsloews Vej 9, DK-Odense, Denmark b Department of Obstetrics and Gynaecology, Skejby Hospital, University Hospital of Aarhus, Aarhus, Denmark c Department of Nursing Science, Institute of Public Health, University of Aarhus, Denmark
KEYWORDS Cancer screening; Illness indicative disease; Pre-cancer; Nursing; Women’s perceptions
Summary The aim of this study is to gain knowledge about women’s perceptions of illness based on their abnormal PAP smears, following screening for cervical cancer. The study uses a phenomenological, hermeneutic approach inspired by Ricoeur’s theory of interpretation. Twelve women, aged between 23 and 59 years, were consecutively selected and then followed by participant observation during their examinations and treatment in hospital. They were interviewed on entering the study, a week following their surgery, and 6 months later. The material collected was analysed through a dialectic process consisting of a facevalue review of participant experiences (naive reading), structural analysis and, critical interpretation of what it means to be potentially ill. The women were unprepared to find that their screening results showed abnormal cells, indicative of incipient genital cancer. They were frustrated by the results as they had not experienced any symptoms and felt well, despite being diagnosed with a potential disease. Being diagnosed with abnormal cells caused the participants to feel anxious. Their anxiety had subsided 6 months after the cells had been removed. For those who did not require treatment, anxiety flared up with recurrent check-ups. The bio-medical differentiation between pre-stage and actual cancer provided no comfort to the participants, who continued to see themselves as having early stage cancer. & 2007 Published by Elsevier Ltd. Zusammenfassung Das Ziel dieser Studie bestand darin, Erkenntnisse u ¨ber die Krankheitswahrnehmung bei Frauen zur gewinnen, bei denen im Rahmen eines Zervixkarzinom-Screenings der PAPAbstrich positiv ausfa ¨llt. Fu ¨r die Studie wurde ein pha ¨nomenologischer hermeneutischer Ansatz gewa ¨hlt, der sich an der Theorie der Interpretation nach Ricoeur orientiert. Zwo ¨lf konsekutiv rekrutierte Patientinnen im Alter zwischen 23 und 59 Jahren wurden wa ¨hrend ihrer Untersuchungen und Behandlungen im Krankenhaus beobachtet (TeilnehmerBeobachtung). Interviews der Probandinnen fanden bei Aufnahme in die Studie, eine Woche nach dem chirurgischen Eingriff sowie sechs Monate postoperativ statt. Die Analyse
Corresponding author. Tel.: +45 6550 4317; fax: +45 6550 3682.
E-mail address: [email protected] (L. Hounsgaard). 1462-3889/$ - see front matter & 2007 Published by Elsevier Ltd. doi:10.1016/j.ejon.2007.04.005
ARTICLE IN PRESS 418
L. Hounsgaard et al. der erhobenen Daten erfolgte in einem dialektischen Prozess einschließlich eines Facevalue-Reviews der Erfahrungen der Teilnehmerinnen (naives Lesen), einer Strukturanalyse sowie einer kritischen Interpretation dessen, was es bedeutet, mo ¨glicherweise krank zu sein. Die Probandinnen waren nicht auf die Nachricht vorbereitet, dass beim Screening anomale Zellen gefunden wurden, die ein beginnendes Zervixkarzinom anzeigen. Sie waren u ¨ber die Screening-Ergebnisse erschrocken, da bei ihnen noch keinerlei Symptome aufgetreten waren und sie sich trotz der festgestellten mo ¨glichen Erkrankung wohlfu ¨hlten. Der Nachweis von anomalen Zellen hatte zur Folge, dass die Probandinnen beunruhigt waren. Diese Unruhe war sechs Monate nach Entfernung der anomalen Zellen ¨ngste bei zuru ¨ckgegangen. Bei Probandinnen, die keiner Therapie bedurften, traten die A jeder Kontrolluntersuchung erneut auf. Die medizinisch-fachliche Unterscheidung zwischen Krebs im Vorstadium und etabliertem Krebs konnte die Probandinnen nicht beruhigen: Diese waren weiterhin u ¨berzeugt, dass sie an Krebs im Fru ¨hstadium litten. & 2007 Published by Elsevier Ltd.
Introduction Clinicians are encouraged to gain more knowledge about the psychosocial impact on patients who are informed of positive results following screening (Det Etiske Ra ˚d (The Ethics Council), 1999). New screening programmes, e.g. for breast, ovarian and colon cancer, will soon be launched or are already taking place in some countries. These new programmes will increasingly expose health professionals to healthy patients undergoing screening for suspected pre- or early stage cancer. From a clinical perspective, having abnormal cells is not considered as critical (Olesen, 1997). However, the patient’s understanding of a disease often differs from that of health professionals (Lunde, 1990). A patient said: ‘‘They know it’s common (the health professionals); they know it’s a small thing—to you it’s the end of the world’’ (Posner and Vessey, 1988). Having been detected with abnormal cells can significantly preoccupy a woman’s daily life. It is often experienced as a threatening condition, and some women interpret the situation as actually having cancer (Posner and Vessey, 1988). Concerns about cancer may be due to a lack of understanding about early disease detection practices and what a pre-cancerous stage means (Lerman et al., 1991). Even after full treatment for abnormal cells, a proportion of the patients may continue to feel threatened and concerned about relapses. Their anxiety remained unchanged despite information relay from professional nurses about the potential disease (Peters et al., 1999). They experienced changes in self-image, sexuality and sleeping patterns. Concern about infecting others during sexual intercourse impacted their desire for sex, and consequently decreased their sexual activity (Campion et al., 1988). Randomized studies, using structured interviews and scale measurements before and after investigation and treatment of screened women, show that results from the screening trigger psychological, psychosocial and psychosexual consequences (Posner and Vessey, 1988; Lerman et al., 1991; Campion et al., 1988; Reelick et al., 1984). A study on the psychological side-effects of the mass screening on cervical cancer concludes, that these psychosocial consequences are not serious or long-lasting (Reelick et al., 1984).
In contrast, a study that used a qualitative interview technique to focus on the screened women’s experienced social and cultural understanding of being detected with abnormal cells shows a considerable impact on the participants’ lives (Peters et al., 1999). In this latter study, the women presented with different degrees of psychosocial consequences that took the form of physical, emotional and social side-effects in daily life. These side-effects usually are manifested as, for example, sleeping disorders, changes in appetite, difficulties in accomplishing daily tasks, workrelated issues, or low participation in regular recreational activities. The emotional impact translated into feelings of unhappiness, depression, anxiety, panic, nervousness, or feeling in a state of suspension or under pressure. The social side-effects on the women included hiding the issue from their respective families and friends, placing the blame on others, and withdrawing from contact with their respective social networks (Peters et al., 1999). There appears to be a lack of knowledge about how women understand, what being detected with abnormal cells means or how this incidence can impact on their lives.
Aim The aim of this study is to gain knowledge about women’s perceptions of illness, based on detected abnormal PAP smears, following screening for cervical cancer. This study looks at the impact on women who learn that their cervical cancer screening results show abnormal cells and how they understand the situation. The study was carried out in collaboration with the Department of Gynaecology and Obstetrics at Skejby Hospital, The University Hospital of Aarhus in Denmark.
Material and method This study uses a phenomenological, hermeneutic approach inspired by the French philosopher, Ricoeur’s, theory of interpretation (Ricoeur, 1979; Pedersen, 1999; Hounsgaard, 2004). Furthermore, the study is based on socio-anthropological fieldwork and uses interview and participant observation techniques with healthy women who participates in a screening programme for cervical cancer.
ARTICLE IN PRESS Experiences of healthy women with pathological cervical smears The fieldwork facilitate interpretation of what the participants are experiencing and allow the professionals in the study to respond by providing the screened participants with a better understanding of any consequences to their condition.
Participants The longitudinal design of any qualitative research holds a risk for data overload, as a substantial amount of information is generated by returning contact with the same participants. It is advisable, therefore, to limit the number of participants in qualitative studies (Morse, 1993). In this study, 12 participants generated sufficient data for analysis and to satisfy the aim of the study. The participants were diagnosed with a potential disease based on the findings of abnormal cells in their cervical smear tests. The inclusion criteria for the study were:
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Data collection The fieldwork was carried out over a 2-year period from December 1999 to December 2002. The length of time each of the 12 participants was implicated in the study ranged from 7 to 15 months (average: 10.5 months). The longitudinal design is detailed in Tables 1 and 2. The tables shows that the participants were observed throughout the course of their illness, including during any additional examinations and required hospital treatments. They were also interviewed in their own homes. Contact with the participants was made at three major points during the study. The initial contact was made following detection of the abnormal cells; during the first hospital appointment; and 6 months following their surgery to remove the abnormal cells (for those requiring treatment) or 6 months after all rolling check-ups at the hospital (for those not requiring treatment).
Participants requiring treatment
women, between 23 and 59 years of age (the established
age range of the Danish screening programme); no previous experience with a serious disease; and diagnosis of moderate to severe cellular abnormalities.
The 12 women, who met the inclusion criteria, were consecutively included by means of referrals from their respective GPs to the hospital’s gynaecology department. The average age of the women was 31.75 years.
Table 1
Seven participants required treatment (see Table 1 for contact types and series of examinations/treatments undergone). Initial contact, which took the form of interviews, was made on admission to the hospital’s gynaecology department, for further investigation. The women were followed by participant observation on several occasions at the hospital, including: during the first examination; during a preparatory interview on the day of the operation and prior to surgery; and during an appointment when test
Types, time-lengths and time-points of contact for participants requiring treatment.
Types Ethnogr. Participant Phone Participant Participant Ethnogr. Participant Participant Phone Ethnogr. of interview obs. conversation obs. obs. interview obs. obs. conversation interview contact Time4 weeks 2 weeks 2 weeks 2 weeks 2 weeks 2 weeks 2 mdr 4 weeks 2 weeks lengths Inclusion Timepoints of contact
First ex. and tests
Testresults
Pre-ex and tests
Operation
On sick leave
Testresults Test at GP
Testresults
Closing
ethnogr. ¼ ethnographic; obs. ¼ observations; ex. ¼ examination
Table 2
Types of contact Timelengths Timepoints of contact
Types, time-lengths and time-points of contact for participants not requiring treatment. A Ethnogr. interview 4 weeks
B Participant Phone obs. conversation 2 weeks 4–6 mths
K Participant Phone obs. conversation 2 weeks 4–6 mths
L-2 Participant Phone obs. conversation 2 weeks 2 weeks
M/N Ethnogr. interview
Inclusion
First ex. and tests
Second ex. Testresults and results
Third ex. Testresults and results
Closing
Testresults
ethnogr. ¼ ethnographic; obs. ¼ observations; ex. ¼ examination
ARTICLE IN PRESS 420 results, following the operation, were given to them. In addition, the participant observer was present at the followup appointment with the GP, 6 months after hospital discharge. Finally, participant observation took place while participants were in the hospital waiting room, with informal conversations that lasted between 10 and 90 min. A family member accompanied the majority of the participants during the first appointment. Information on the consequences of the test results, gathered from telephone conversations with the participants, was also used to analyse, for future reference, the impact of receiving such diagnoses. The length of the initial interviews ranged from 25 to 78 min (average: 44 min). A second interview took place 1 week after surgery, while the participants were on sick leave from work. Each of these interviews had a duration between 38 and 58 min (average: 46 min). The final interview took place 6 months after hospital discharge and lasted between 20 and 90 min (average: 47 min).
Participants not requiring treatment Five participants did not require treatment but were monitored by means of PAP tests and tissue samples taken at the hospital, at intervals of 4–6 months. Participation by this group started and finished by means of an interview, as depicted in Table 2. The time used for these interviews did not differ from the group requiring treatment. The participants were contacted by telephone regarding their test results. As there were recurrent check-ups, there was more contact made with the participants not requiring treatment by the field-workers in the hospital, and more telephone contact than with the participants requiring treatment. The time spent in the waiting room was similar for all of the study participants. A semi-structured interview guide helped the interviewer and the participant to keep centred on the experience of being detected with abnormal cells. The interviews were audio-taped.
Data processing The audio-taped interviews were transferred to the Qualitative Media Analyzer (QMA) (Skou, 2001), a sound-based data programme that facilitates analysis of sound data without transcription (Hounsgaard, 2004). Field notes from participant observations in the waiting room, at appointments, and following surgery, were taped immediately following these events. The field notes were supported by audio-tape recording during the appointments. The collected data was stored in the QMA. The data comprised: 37 h of sound-based data from 28 interviews; 12 h of sound-based data from participant observation during 31 interviews; sound-based field notes from 5 surgical procedures; and sound-based field notes from 25 telephone conversations at the time participants received their test results.
Analysis Using a method inspired by Ricoeur, the data were analysed on three levels: naive reading, structured analysis and,
L. Hounsgaard et al. critical interpretation (Ricoeur, 1979; Pedersen, 1999; Hounsgaard, 2004).
Naive reading According to Ricoeur, the naive reading requires that the researcher read the text using a phenomenological approach, i.e. remaining non-judgemental and reading the text at face value. Naive reading helps to obtain a holistic understanding of the meaning content. All of the data (i.e. observational data, field notes and interviews) were processed thoroughly by re-reading and re-hearing them repeatedly. This helped to grasp the meaning content (what was said) about the experiences discussed during field work, and led to initial steps in understanding the significance of how the women perceived their potential illness.
Structural analysis Structural analysis aims to clarify any dialectics between the holistic understanding of the naive readings and explanation of what the texts mean prior to deeper critical interpretation. Structural analysis is a shift from what the text says to what it actually means, first by describing units of meaning (what was said), then by identifying and formulating units of significance (what the text means) and finally to develop themes for critical interpretation.
Critical interpretation The themes identified by the structural analysis are interpreted and discussed during critical interpretation. Through this process, interpretation of the themes reverts to the text in a hermeneutic spiral that reflects a dialectic process between explanation and comprehension. During the critical interpretation and discussion, it is possible to delve deeper into the themes and to facilitate the development of a new understanding and new knowledge, in a shift from the superficial to more in-depth interpretation.
Ethical considerations The Committee for Scientific Ethics approved the study. Participation in the study was voluntary and a written informed consent was required of the participants prior to the initial interviews. It was underscored that they could withdraw from participating in the study, at their own will, at any time. Anonymity was guaranteed by ensuring strict confidentiality of the audiotapes and field notes related to the study.
Results Phases and emerging themes Each of the 12 participants experienced a unique course of events. These events could be categorized into three phases: a pre-diagnostic, diagnostic and post-diagnostic phase. The women’s statements referred to each of these phases, and highlighted aspects that were simultaneously
ARTICLE IN PRESS Experiences of healthy women with pathological cervical smears
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Table 3 Overview of results of structural analysis with derived themes, examples of units of meaning as quotations taken from the text from the naı¨ve reading. Phase
Units of meaning (what is said)
Theme and units of significance (what is being spoken about)
The prediagnostic phase
Being healthy and potentially ill
‘‘It took me completely by surprise’’ ‘‘A warning of something serious’’ ‘‘you’re sick when you’ve got a temperature’’ ‘‘I feel well and maybe I’m ill’’ ‘‘If it isn’t cancer, what is it?’’ ‘‘I have dark thoughts’’ ‘‘I went into a blind panic’’ ‘‘I’m not the sort who gets cancer’’ ‘‘Suddenly, it isn’t so scary any more’’
Screening result form Between healthy and ill Potentially ill Significant life phenomena Understanding in everyday life
The diagnostic phase
Being a patient and suffering
‘‘I’ve never been in hospital ‘‘ ‘‘It’s like a production line’’ ‘‘The fear that there was something wrong made me ill’’, ‘‘It’s a big system to have confidence in’’ ‘‘I don’t want to be cremated or deep-frozen ‘‘
Patient role Illness and suffering in the group requiring surgery Illness and suffering in the group having recurrent check-ups
‘‘I just don’t want to think about it’’ The postdiagnostic phase
Being off work and suffering
‘‘I’m afraid of getting bored’’, ‘‘I was surprised I was so tired’’ ‘‘Suddenly your daily routine has been turned upside down’’, ‘‘My boyfriend is running the house’’ ‘‘I read something worrying. The cell changes had penetrated the spinal cord’’ ‘‘It’s the little things that usually irritate’’
seen as frustrating, significant and difficult to interpret. Table 3 presents meaning content at all three phases, in the form of selected quotations from the participants. The prediagnostic phase covered that period of the potential illness course (i.e. when the women were made aware of their screening results to the time of clinical follow-up in the outpatient department, where colposcopies and histological tissue samples confirmed their diagnoses). Results of the tissue samples, made available during the diagnostic phase, determined the course of illness, that then proceeded in one of two directions, i.e. a curative course, including surgery to remove abnormal cells by cervical conization, followed by a period of recuperation (Table 1); or a control check-up period, involving recurrent testing (Table 2). The postdiagnostic phase included the period following surgery, control check-ups and discharge from hospital. In general, the participants expressed frustration in being healthy but simultaneously being potentially ill. The way in which the screening result was communicated to them, impacted the conduct of their daily lives. An important theme, being a patient and suffering during meetings with
On sick leave The role of illness The meaning of suffering
the healthcare professionals, when receiving a diagnosis of abnormal cells and when undergoing surgery for this at the hospital, surfaced. A healthy person with abnormal cells can experience being labelled as a patient when subjected to the framework and routines of the hospital. This is true for participants requiring treatment as well as those who does not requiring treatment. Suffering and finding significance in having a potential illness, was another emanating theme for those participants who reflected on or lived through the experience while on sick leave and during the 6 months up to the follow-up appointment with the GP.
Being healthy and potentially ill In the pre-diagnostic phase, and more specifically when shown their screening results, the study shows that the women were unprepared to do anything other than to confirm that they felt well and healthy. Their understanding of illness was characterised by the idea that a healthy lifestyle will protect against serious illness. There was,
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therefore, some uncertainty in the understanding of what illness meant, when one feels healthy and symptom free but simultaneously is diagnosed as potentially ill. A series of understandings arose, ranging from a condition that could be changed by surgery to a more existential experience that impacts the participant’s cultural and social circumstances. The reaction experienced by the women included a diffuse anxiety that filled their lonely moments, i.e. existential thoughts about dying, because the fatal consequences of having abnormal cells filled their minds as did the realization that life is not eternal. Speculations about having early stage cancer left the women unempowered to act. Instead, they were numbed by speculations and were unable to concentrate during the period between being examined and receiving the results of their tissue samples. Actions taken by the health professionals during the pre-diagnostic phase focused on helping the women to grasp their situation and to understand it by drawing parallels with comparable illness experiences in their network of family and friends.
Being unable to work and suffering
Being a patient and suffering
This study had an exploratory aim. Had the aim been to create a general understanding of illness based only on the result of a positive screening, it would have been an important limitation that could have restricted the study to the perspective of 12 women confronting a potential illness. The study focused on how participants understood their illness. Using the healthcare professional’s biomedical understanding of disease as a counterweight to the screened participants’ perceptions of illness could enrich the discussion regarding the conduct of screening results in future research and clinical nursing practice.
During the diagnostic phase, the patients requested information about any consequences that being potentially ill could have on their daily lives. Instead, they found themselves assuming the role of patients, where physicians in the outpatient department seemed more focused on extracting high quality tissue samples for testing than being respondent to their concerns. This indifference caused the women to become more withdrawn and hesitant to raise questions with the health professionals. The language used by the professionals during the information also had an impact on the women. Their use of technical terms while maintaining a friendly demeanour raised the level of uncertainty of the participants. Despite the fact that the gynaecological examination did not cause much physical discomfort, the women were anxious that the physician might find something seriously wrong. They also felt awkward being half-dressed in front of several observers. During the surgical period, the women were comforted by explanations provided to them about the use of anaesthesia and about the operation itself, and they were guaranteed that they would survive the operation and would wake up from the anaesthetic. While waking out of the anaesthesia, it proved important that the health care providers took time to be with the patient and to come into dialogue with her, despite the fact that this time was limited to only a few minutes. How the women estimated the personnel’s expertise had an impact on how they experienced their outpatient surgery. In anticipation of each recurrent control check-up, it was characteristic of the women to experience poor sleep patterns and diminished ability to concentrate up to the time when new tissue samples were taken and they were informed of the results. The recurrent check-ups with new tissue samples and new periods of waiting for results reactivated the participants’ anxiety. The women’s understanding of illness changed only during the control check-up period, as they gained a broader clinical insight into what abnormal cells meant and in perspective, they could see earlier comparable experiences with illnesses amongst family members and friends.
In the post-diagnostic phase, the women’s understanding of illness moved from chaos to clarity. The women found their recuperation period very significant. They used the period to reflect on their current situations and to decide how they would move forward. New perspectives on life opened for them and gave them renewed energy, despite their speculations about having possible signs of early cancer. Their fear of dying was exchanged for a joy in living and the opportunity presented itself for an improved and more nuanced self-understanding. Finding purpose in suffering is a personal process that one experiences with the support and empathy of family members, one’s social network and not least health care professionals.
Discussion Methodological considerations
Discussion on the findings The aim of this study was to gain knowledge about women’s perceptions of illness based on experiences of participants with abnormal cells after screening for cervical cancer. The study shows that the women went through a process where the understanding of illness developed and changed from the moment the diagnosis was communicated to them up to 6 months following completion of their examinations and treatment at the hospital. Similarly, Reelick et al. (1984), in a study on the psychosocial effects of screening, found that being informed of test results showing abnormal cells can be perceived as life-threatening and can trigger existential thoughts about one’s mortality. The condition causes anxiety and restlessness, followed by dramatic changes in a person’s social and cultural daily life. Other authors (Lerman et al., 1991; Peters et al., 1999; Campion et al., 1988) underpin their findings of these psychosocial effects with questionnaires and scale measurements of the anxiety experienced. Effects arise. They are not serious or long lasting. These studies do not indicate that the psychosocial effects are triggered by a personal growth, as is the case in this study. The participants of this study found a meaning in their illness rather than seeing it as simply an isolated event. This meaning promoted existential growth during which anxiety caused by the illness transformed into a joy in living. Like other research results, the study highlights the fact that the health professional’s understanding of illness is
ARTICLE IN PRESS Experiences of healthy women with pathological cervical smears often different from that of the patient (Lunde, 1990). Kleinman’s definitions of illness (suffering) and disease underscore this difference (Kleinman, 1980). According to Kleinman, illness is the channel through which patients, families and communities learn to interpret and communicate symptoms. The term ‘‘potentially ill’’ will be understood according to each person’s background and socioeconomic circumstances as the term depends on one’s earlier experiences of illness and life experiences. Disease means illness to the health care provider, who thinks and functions within the framework of a traditional health care system. In the Danish health care system, health professionals often take action based on objective and measurable physical or psychological changes that can be classified within an established diagnostic system. Illness and disease partially overlap (Skou, 2001). A stringent bio-medical divide between seeing cell changes as a pre-stage to cancer or cancer itself cannot be understood by lay-people being screened for the disease. A generally unclear use of the term cancer and abnormal cells by the health care system can lead to these terms being understood interchangeably. That is why people who are screened face difficulties in understanding the difference between a pre-stage cancer and actually having the disease and cause them to become anxious about possibly being seriously ill. This reasoning is in agreement with the findings of an Australian study on women’s understanding of the pre-cancer concept (Gregory and McKie, 1992).
Conclusion The study shows that screening participants are unprepared for their results to reveal abnormal cells. It is a significant event to have a potential illness detected because existential thoughts arise about one’s own mortality. Although the incident sets in motion the opportunity for personal growth and development, it carries in its wake, both anxiety and uncertainty in daily life. The layman’s understanding of the illness is that the screening result is a sign of the beginnings of cancer in the womb. This results in frustration at being symptom-free and feeling well but simultaneously being diagnosed as potentially ill. The biomedical distinctions between pre-stage cancer and cancer mean little to screened participants. For them it is difficult to understand that cell changes are anything other than a life-threatening illness. The study can be seen as a contribution to health policy and opens a debate about screening programmes. Insight into what it means to be in a position of having a potential illness following participation in screening, may contribute to our knowledge on the significance of the screening outcomes on a person’s daily life. This knowledge is important to both policy-makers and healthcare professionals in the debate about the psychosocial consequences of participating in screening. It may also contribute to the
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knowledge of clinical nurses regarding special care and attention needed for people undergoing screening.
Acknowledgements Funding: This study was supported by grants from the Department of Obstetrics and Gynaecology, Skejby Hospital, the University Hospital of Aarhus, Århus County Research Initiative, The Professional Union of Teaching Nurses, the Nursing Research Foundation, the Danish Nurses’ Organization, The Lundbeck Foundation and the Novo Nordic Foundation.
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