THREE

esyim

awake_crainomoty.docx_..geni_1.docx

Home >Social Science homework help >THREE

Cancer Nursing

Issue: Volume 31(2), March/April 2008, pp 166-172

Publication Type: [ARTICLES]

DOI: 10.1097/01.NCC.0000305699.97625.dc

ISSN: 0162-220X

Accession: 00002820-200803000-00014

Keywords: Awake craniotomy, Brain neoplasm, Patient experience, Phenomenology, Qualitative research methods

The Experience of Patients Undergoing Awake Craniotomy: In the Patients' Own Words. A

Qualitative Study

Palese, Alvisa DNS, MNS, BNS, RN; Skrap, Miran MD; Fachin, Martina BNS, RN; Visioli, Sonia BA; Zannini, Lucia BA, PhD

Author Information

Authors' Affiliations: School of Nursing (Prof Palese), Infectious Diseases Unit, (Ms Fachin), University of Udine, Udine, Italy; Neurosurgery Department, Azienda Ospedaliero-Universitaria, Udine, Italy (Dr Skrap); Istuito Clinico Humanitas (Dr Visioli) and Department of Public Health, Faculty of Medicine, University of Milan, Milan, Italy (Prof Zannini).

Corresponding author: Alvisa Palese, DNS, MNS, BNS, RN, School of Nursing, Udine University, Viale Ungheria 18, 33100 Udine, Italy ([email protected]).

Accepted for publication June 27, 2007.

Abstract

Intraoperative mapping is a well-established and safe technique to maximize the excision of tumors involving the eloquent cortex while minimizing neurological damage. Although different techniques are used, very little has been documented about how the patients feel, what they think about, or how they approach this type of surgery without an anesthetic.

Considering the inconsistency of literature, a phenomenology study was conducted with the purpose to describe the human experience of patients before, during, and immediately after awake craniotomy.

Twenty-one patients were interviewed at length, both the evening before and the evening after surgery.

Awake craniotomy is a complex and subjective experience, the behavioral patterns of the subjects interviewed can be attributed to the instinct of self-preservation, the ability to participate during the procedure helping the surgeon in avoiding brain damage; to be in control of the situation; and to reassure themselves and others. It is most important for a healthcare team to understand the patients' experiences. Immediately before and after surgery, the patients seem to concentrate more on keeping their emotions in check and focus on the risk of subsequent defect or disability, rather than on the brain cancer and what it may imply on life. During the surgery, they become particularly involved in the task: they feel directly responsible for the results of surgery relating this to the effectiveness of collaboration with the neurosurgeons.

--------------------------------------------------------------------------------

Intraoperative mapping is a well-established and safe technique to maximize the excision of tumors involving the eloquent cortex while minimizing neurological damage.1-3 Although different techniques are used, very little has been documented about how the asleep patients feel and what they think during the procedure on their brain.

Recently, Whittle et al 4 reported the impressions of 15 patients undergoing this type of surgery; before this, Danks et al 5 documented patients' subjective experiences during surgery, pain intensity, and the main factors that influenced patient comfort during an awake craniotomy. They concluded that awake craniotomy is well tolerated by patients.

This study has stimulated debate particularly on the different impact of anesthesia used during craniotomy, which could produce different effects on memory and on the level of tolerance. No other literature about patients' intraoperative experiences has emerged. Considering the very limited amount of literature, a qualitative study was undertaken to explore and describe the experiences of patients undergoing awake craniotomy.

Methods

Aim

The aim of the study was to reveal participants' experiences before, during, and immediately after awake craniotomy.

Design

A phenomenology study was conducted with the purpose of describing the human experience of patients undergoing awake craniotomy. The main purpose of the phenomenographic approach is to describe lived experiences.6 Phenomenology values subjective meanings given to human encounters with the world and emphasizes how life is experienced.7

Setting and Participants

The study was carried out in the neurosurgical unit of the Santa Maria della Misericordia Hospital (Udine) where awake craniotomy surgery has been performed since 1998. A purposeful sample was selected for this research project.

The inclusion criteria were patients (a) with a brain neoplasm who were awaiting surgery under local anesthesia, (b) who were older than 18 years, (c) without language or cognitive disabilities, and (d) who were ready to collaborate and accept an interview.

The research involved 21 patients who underwent awake craniotomy from March to November 2004. The participants' ages ranged from 20 to 63 years; there were 11 women and 10 men. Twelve participants had mapping of the movement area, whereas 9 had mapping of the language area. The anesthetics used were the same for all patients. All patients were awake from the beginning through all the procedure.

Ethical Issues

Assurance that participation in the study would in no way affect the patients' care was provided. It was also guaranteed that the study would be confidential and that the patients would remain anonymous. Approval was obtained from the local health service and university research headquarters, and permission was obtained from local service managers and consultants to approach patients. Because of the open, emerging and unpredictable nature of phenomenological research, the researcher only asked for informed consent for the first contact with the patient. The informed consent given before the interview was reevaluated throughout the research process. If participants became distressed at any time, the interviewer stopped and gave the patients time to compose themselves; occasionally, the interview had to be terminated or restarted at a different time. The same researcher (MF) did all the interviews. She had had training in conducting interviews and was also supervised.

Data Collection

Each participant was met 3 times: initially, the interviewer asked consent and made an appointment for the first interview the day before surgery. The second interview has been the day after surgery. To encourage freedom of speech, the interview was guided only by a brief interview schedule comprising open-ended questions (Table 1). Each interview lasted from 30 to 60 minutes was audio recorded.

Graphic Table 1

Conceptual Framework for Data Analysis

Before data collection, the researchers' ideas were bracketed 6 to identify personal biases and to clarify any personal experiences or beliefs that may color what they were going to hear and report.

Researchers used 5 steps:6,8,9

1. Familiarization: all the transcripts were carefully read for complete understanding.

2. Compilation: researchers identified the most significant elements stated by each participant.

3. Condensation: researchers reduced the individual answers to find the crux of each dialogue, then identified the meaning of significant statements, phrases, or other parts of the dialogue.

4. Themes: the researchers compared these statements, put them into categories, and tried to establish borders between the categories.

5. Contrastive comparison of categories: the researchers identified the unique character of each category as well as comparing and contrasting between categories.

Different strategies were adopted to develop credible findings: (a) a team of multidisciplinary researchers was used to increase knowledgeable interaction during data analysis; (b) AP, MF, SV, and LZ were responsible for data analysis: they collaborated on the first step but worked independently in the second and third; (c) they then worked together closely in triangulation to achieve consistency and agreement of their findings.10,11

Findings

It was evident that awake craniotomy surgery is a complex experience with a considerable impact on the patient (Tables 2 and 3).

Graphic Table 2 Graphic Table 3

Preoperative Concerns: Self-preservation

The participants felt that the intervention done under local anesthesia was almost not negotiable because they understood that it was a unique way to reduce collateral damage and mental defects or disabilities.

…They told me: "If you want we could use general anaesthesia. But I suppose if the doctors suggest a local anaesthetic, this is what they prefer to use for the operation…"

The patients accepted this passively but, at the same time, they felt they were playing an active role in the decisions.

…It is my role during the operation to help the neurosurgeon understand where it is dangerous to touch and where he should be operating…

Only 1 of the participants used the term "neoplasm." Their main concern was related to the size of their cerebral tumor and not with the fact that surgery would prevent further disabilities.

…I feel confident because the tumour is very small; when the tumour is quite big the neurosurgeon usually prefers to operate with the patient under general anaesthetic…

A recurrent reason given for surgery that emerged during interviews was "to prevent disabilities," not only the removal of the neoplasm; they appeared to fear movement defects more than language or speech defects, even when the language area had been mapped. Some patients experienced very negative feelings (fear, anguish, terror) related to the risks of disability. Some of them had quite positive feelings: they felt confident in the outcome, felt involved in the decision making, and had a sense of responsibility and of playing an active role.

…I could help the doctors find the right place to operate and make decisions…

Never one mentioned prognosis, survival time, or cognitive deficit.

Preoperative Concerns: Working Out the Intraoperative Role

The evening before surgery, the participants shared their feelings with others. They used family support or other people's resources to cope with the situation. Preoperative feelings are very intense: the participants said they needed to do a lot of things in preparation and as a means of distraction (write, read, pray, watch television, have a shower); they mentioned walking aimlessly around the ward and their need to stay close to their family. When the family were not able to help them or were not available to help them in this stressful time, participants would sit with patients recovering from the same or other cerebral problems. They often wanted to protect their families by not involving them in the ordeal.

…The world is not only falling apart for me but also for my family. I'm keeping them out of it…

They understood their important role (toward the family and the imminent operation) but, at the same time, they feared not being able to control their actions during the operation.

I'm afraid because I'm not sure…if I can control myself during the operation…

Participants were preparing to live one of the most important experiences in their life. They were able to imagine the main phases of surgery but had some difficulty speaking about them. They felt afraid of how they would manage intraoperatory time and how they would react to any task that the neurosurgeon would ask them to do (speak, read, or move something). During the interview the day before surgery, they were able to describe their role as well as the neurosurgeon had explained it to them. They were able to talk about some of the instruments that would probably be used during the operation (using familiar terms, such as "hand drill" or "hand mixer" for the burr hole drill and "small nails" for cranial fixing nails). In this way, they were probably trying to create a feeling of confidence and familiarity with the operating room and the instruments.

Participants avoided thinking of how they would deal with the operation stage. Trying to imagine the intraoperative experience was very emotional.

…They're going to open something closed… My brain has never been seen before; and they will be able to see what happens when I speak or move something… It is incredible.

They needed to stay alone to prepare what the neurosurgeon had asked them to do, while, at the same time, they wanted to stay with the family and do other things; they did not think about the operation but only the role they were expected to play. In this way, they worked out their intraoperative role. They needed time for this but also wanted to have the surgery as soon as possible.

Intraoperative Concerns: Keeping the Situation Under Control

One patient talked about his experiences through the different phases of intervention.

…I was taken from my room to the operating theatre…it was a long way and we turned a lot of corners…in the middle of the operating-room there was a huge light, enormous… When I got there I saw the anaesthetist, the same person I had spoken to the day before…there was also a nurse, probably a nurse. They inserted a lot of needles. They put up an intravenous line (a "drip") and put drugs in that. I was very comfortable and relaxed but awake…

I was covered with something…they gave me a local anaesthetic. After that they started to prick my head but I couldn't really feel much… I understood that they were opening my skull. I felt my head vibrate a lot…they were cutting something with the drill, it shook and vibrated and so did my head; I started to concentrate on the tasks… I asked when I would have to do something, when the doctor would ask me to do something. I paid a lot of attention to what was happening in the operating room too…

During the intervention, the patients concentrated on what the others in the operating room were doing and what they were asking; they assumed their required role immediately and remembered anxiously waiting for the first task.

They felt impotent during the operation and felt they had no effective strategy to intervene, even if they felt something was not going according to plan. Time was not a problem, and concentration on the task was intense. Having control over the situation was more important than feelings and emotions.

The experience (Table 3) was remembered acutely by their senses (sight, touch, smell), but hearing (listening to spoken language and orders from the surgeon and hearing noises) played the strongest role. Each participant remembered the craniotomy vividly, the use of the drill, and when the head was fixed: these phases are the most difficult because of the noise and vibrations, the pain, and the uncomfortable position.

Not all the participants remembered the most crucial moment during surgery, that is when the neurosurgeon stimulated the cerebral cortex, but patients who did remember focused their whole experience on this. They felt really surprised at what they perceived to be a short length of time for the operation.

[During the intervention] I was continuously asking myself when the neurosurgeon would start asking me to do the tasks…

They tried to imagine what was being done in each moment, to understand at what stage they were, and to remain in control of the situation. When they could not imagine the proceedings, they tried to guess

…I was wondering what they were doing in that moment… I tried to guess because I couldn't see…

It was very important for the patients to have information during the operation when it was impossible for them to know at exactly which stage the surgeon was. They also found that speaking directly to the neurosurgeon, or listening to the staff speaking to each other, or receiving a positive feedback from the neurosurgeon was very reassuring because importantly, it helped them remain in control.

Two participants remember the strange experience of finger movement without control. Four participants had speech arrest but did not place a lot of importance on this experience. One remembers having answered the neurosurgeon in English, not in Italian, 1 remembered feeling nervous and the desire to escape, 1 did not remember anything about this, and the other remembered but placed no emphasis on it.

Three patients felt no pain, 1 patient remembered feeling severe pain, and the other patients described feeling a moderate level of pain. Head fixing and the administration of the local anesthesia were the most painful moments.

Postoperative Concerns: Reassuring Themselves and Others

After leaving the operating room, the patients took stock of the language or motor disabilities and their feelings and were relieved to meet up with family members and return to some form of normality. They felt tired, as though they had done a full day of work.

They were very surprised that they felt so well and that there were no typical postoperative symptoms such as vomiting, nausea, or pain. They did not speak about their illness; they emerged from this apparently surreal positive experience. Some metaphors "led the patient away from himself, i.e. they were surreal," and others "involved the patient in a real-life experience" (Table 4).

Graphic Table 4

Discussion

This study was conducted to increase our understanding of the experience of patients undergoing awake craniotomy. The 21 participants in the study provided clear evidence that awake craniotomy had a significant impact on their lives. In spite of the few scheduled questions, patients have shared their in-depth lived experience. The nature of this subjective experience is intrinsically individual and complex. However, 4 concerns were identified in the data. These were self-protection, preparation time for confronting this difficult task where they could not rely only on their own resources and constructing their intraoperative role, keeping the situation under control, and reassuring themselves and others. In the preoperative interview, participants described their emotions and the process they were using to learn their new role, then in the postoperative interview, they described this new role experience and the need to find out as soon as possible if they would have any disabilities in the future.

Participants gave high priority to playing an active role, which could have a positive impact on himself or herself: prognosis, survival time of life, and cognitive damage are not mentioned in their narratives.

The day before surgery, coping strategies were based on external resources, but there was a constant preoccupation about their intraoperative role; patients were facing this new situation either alone or with their family. They never mentioned nurses, probably because the nurses only asked things related to the intervention (regarding preparation, drugs, etc) and treated patients impersonally in a passive role while they were attempting to construct active ones, or because they had only known the nurses for a short time (for no more than 4-5 hours).

The participant's family is his or her first choice for support:12,13 they could help the patient cope with hospitalization and his or her agitation, but sometimes the patient wanted to protect them from any distress. It was very important for the patient to have all the help that he or she needed and also to relate to other patients with the same problem.14

During their intraoperative experience, participants were fully concentrated on the task at hand: it seems that this concentration totally absorbed other thoughts, emotions, and feelings. Patients need to feel in control of the situation, and to understand what was happening, they used their senses (hearing, touch, and sight); he or she is acutely aware of what the neurosurgeons say and are able to guess what they are doing. This actually gives the patients a false sense of security because when problems arise during surgery (eg, speech arrest), they are not able to remember any particular emotions, experiences, or interventions. One patient did want to escape from the operating room when his or her speech was interrupted by cortical stimulation. For improved quality of care, these experiences suggest that it is necessary to repeat some information on what may happen and to give positive feedback to the patient during his or her collaboration.

Fear of the intraoperative period was only present the day before surgery; participants were afraid of what they had to do and whether they could maintain self-control during the intervention. On the day after the operation, they did not remember these fears.

Time given to prepare for the intervention is considered sufficient: if a longer period were given, without emotional support, it could become unbearable. Intraoperative time is not a problem either, although it is one of the patient's main concerns, because his or her attention is focused on the tasks required and on what is happening.

At least half of the patients remember the craniotomy as the worst experience during the whole operation; their descriptions were strongly linked to the surgical sequences and could have been partly influenced by the detailed instructions they had received the previous evening. The drill is very noisy and does produce unpleasant vibrations. The position of the body and the head-fixing procedure are also critical aspects for the patient. These operational procedures seem to be the ones that need to be monitored with utmost care to protect the patient's confidence and feelings.

According to Scott et al,15 a metaphor is never arbitrary: the metaphors chosen by participants were not dramatic and concentrated on the fact that "it was a surreal experience, very different from anything I have ever done," demonstrating the extraordinary characteristics of the experience.

Limits and Summary

In this study, we tried to discover the essence of patients' experiences when they undergo awake craniotomy. The results cannot be generalized because they were taken from the singular experiences of patients, as expressed by them during interviews. Nevertheless, it is important for the healthcare team to think about the patient's experiences to better understand how to prioritize the needs of the patient. Immediately before and after surgery, it seems that most patients concentrate on keeping their thoughts focused on the risk of disability and less on the actual brain cancer. This is when they need considerable emotional support and also to be kept well informed, so as to allay anxieties and help them to understand the role they have to play during the operation. During the surgery, the patients felt a sense being involved in the proceedings: their perception of the surgical results was directly related to how effective they felt their collaboration with the neurosurgeons was. During surgery, the patient needs encouragement and reassurance to receive feedback and to count on all these to guarantee a positive outcome. The patients were surprised at how well they felt after the operation, they also wanted to see their relatives on arrival back in the ward. Further research on the impact on living this complex experience and further exploration of the impact that this procedure has on patients' families are needed.

References

1. Berger MS, Kincaid J, Ojemann GA, Lettich E. Brain mapping techniques to maximize resection, safety and seizure control in children with brain tumours. Neurosurgery. 1989;25:786-792. [Context Link]

2. Black PM, Ronner SF. Cortical mapping for defining the limits of tumour resection. Neurosurgery. 1987;20:914-919. [Context Link]

3. Walsh AR, Schmidt RH, Marsh HT. Cortical mapping and local anaesthetic resection as an aid to surgery of low and intermediate grade gliomas. Br J Neurosurg. 1992;6:119-124. [Context Link]

4. Whittle IR, Midgley S, Georges H, Pringle AM, Taylor R. Patient perceptions of "awake" brain tumor surgery. Acta Neurochir (Wien). 2005;147:275-277. [Context Link]

5. Danks R, Anfrew MD, Rogers M, Aglio LS, Gugino LD, Black P. Patient tolerance of craniotomy performed with patient under local anaesthesia and monitored conscious sedation. Neurosurgery. 1988;42:28-36. [Context Link]

6. Streubert HS, Streubert HL, Carpenter DR. Qualitative Research in Nursing. Philadelphia, Pa: Lippincott Williams & Williams; 2003:43-88. [Context Link]

7. Jones A. A condensed history of the phenomenology: the first and the second phases from Franz Brentano to Hans-Georg Gadamer. Nurse Res. 2001;8(4):65-75. [Context Link]

8. Silverman D. Interpreting Qualitative Data. London: Sage Publications; 2001:83-115, 219-255. [Context Link]

9. Sandelowski J, Barroso J. Finding the findings in qualitative studies. J Nurs Scholarsh. 2002;34(3):213-219. [Context Link]

10. Polit DF, Beck CT. Essentials of Nursing Research-Methods, Appraisal, and Utilisation. Philadelphia, Pa: JB Lippincott Co; 2006. [Context Link]

11. Rose P, Beeby J, Parker D. Academic rigour in the lived experience of researchers using phenomenological methods in nursing. J Adv Nurs. 1995;21:1123-1129. [Context Link]

12. Lepola I, Toljiamo M, Aho R, Louet T. Being a brain tumour patient: a descriptive study of patients' experiences. J Neurosci Nurs. 2001;33:143-147. [Context Link]

13. Wideheim AK, Edvarsson T, Påhlson A, Ahlström G. A family's perspective on living with a highly malignant brain tumor. Cancer Nurs. 2002;25:236-244. Ovid Full Text [Context Link]

14. Leavitt MB, Lamb SA, Voss BS. Brain tumour support group: content themes and mechanisms to support. Oncol Nurs Forum. 1996;23:1247-1256. [Context Link]

15. Scott DW, Oberst MT, Dropkin MJ. A stress-coping model. ANS Adv Nurs Sci. 1980;3:9-23. [Context Link]