581513 research-article2015
HPQ0010.1177/1359105315581513Journal of Health PsychologyHowie et al.
Article
Patient experiences of awake craniotomy: An Interpretative Phenomenological Analysis
Journal of Health Psychology 1–12 © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1359105315581513 hpq.sagepub.com
Emma Howie1,2, Jacki Bambrough2,3, Konstantina Karabatsou3 and John RE Fox4,5
Abstract Awake craniotomy with language mapping enables maximum resection of tumours in eloquent areas while preserving function. This study aims to understand the lived experiences of those undergoing an awake craniotomy. Six participants who underwent awake craniotomy were interviewed, and the data were analysed using Interpretative Phenomenological Analysis. Themes were identified as ‘Unspeakable Fear’, ‘Dissociation’ and ‘Control and Responsibility’. Participants discussed how surgery was a threat to the sense of self. Dissociation during surgery operated as a protective mechanism, while the surgical team all had roles in maintaining this bubble of dissociation, such as being a support to the patient’s emotional needs.
Keywords cancer, clinical health psychology, Interpretative Phenomenological Analysis, intervention, neurosurgery
Introduction Although rare, brain tumours often have a multifaceted impact on an individual’s biopsychosocial wellbeing. Historically, treatment in socalled eloquent areas of the brain, areas essential to language, movement or sensation, has been limited due to the risks to these functions. Awake craniotomy with cortical and subcortical language mapping, a surgical paradigm described by Duffau et al. (2005), is one of the few advances in neurosurgery to offer treatment to these types of tumours. Research has demonstrated that it is possible to resect tumours in eloquent cortex that would have previously been considered inoperable, thereby maximising the benefit to risk ratio of surgery (De Benedictis et al., 2010; Duffau, 2000; Duffau et al., 2000). Duffau et al. (2008) report that tumour resection without a safety margin may
result in transient language impairment immediately following surgery; however, this is rarely permanent and the vast majority of patients’ language skills return to baseline by 3 months post-surgery. Awake craniotomy with cortical and subcortical language mapping, therefore, allows tumours in
1Royal
Manchester Children’s Hospital, UK University of Manchester, UK 3Salford Royal Hospital, UK 4University of London, UK 5Barnet, Enfield and Haringey Mental Health NHS Trust, UK 2The
Corresponding author: John RE Fox, Department of Psychology, Royal Holloway University of London, Egham Hill, Egham, Surrey TW20 0EX, UK. Email: [email protected]
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eloquent areas to be substantially resected while preserving language functioning, increasing survival and enabling patients to retain social and professional functioning (Benzagmout et al., 2007; De Benedictis et al., 2010). Cortical and subcortical language mapping approaches require a high level of participation from the patient throughout a lengthy surgical procedure. In practice, this means that a neuropsychologist sits with the patient in the operating theatre and undertakes specific neuropsychological tasks to map specific sites within the brain during the operation. There is a paucity of research exploring the lived experience of patients undergoing this procedure. Research relating to awake craniotomy with language mapping has focussed mainly on medical outcomes and the incidence of language impairment following surgery. The few qualitative studies examining awake craniotomy are varied in methodology and scope. One theme repeated throughout the literature is the importance of trust in one’s surgeon (Bernstein et al., 2004; Khu et al., 2010). However, the richness of data varies depending on methodology (questionnaire vs structured interview vs semi-structured interview, open vs closed questioning, etc). Research looking at satisfaction with rather than experiences of surgery can be interesting but is inherently limited in scope (Danks et al., 1998; Manninen et al., 2006). Furthermore, some studies have conducted interviews while patients were still in hospital with little time to reflect (Bernstein et al., 2004; Khu et al., 2010; Palese et al., 2008). The aim of this study is to develop our understanding of the experience of having an awake craniotomy at the first UK centre to adopt the Duffau paradigm. Previous research has primarily focussed on the clinical and bodily processes, with little consideration of how this is experienced and made sense of by the patient. Awake craniotomy with cortical and subcortical mapping remains a novel procedure, and in order to complete this mapping process, patients are required to be fully participative throughout what can be a long and protracted surgical procedure. The impact of this and the way in which this experience is understood and managed by the patient have not been explored in detail, and
this study aims to explore the lived experiences of individuals who have had an awake craniotomy with cortical and subcortical language mapping. There is a growing use of Interpretative Phenomenological Analysis (IPA) within health psychology, such as Hilgart et al.’s (2013) research into individuals’ experiences of negative genetic test result for familial hypercholesterolaemia and Williams et al.’s (2011) study of the experiences of young people with epidermolysis bullosa simplex. Indeed, research has started to use IPA with more neurological conditions, such as with adjustment and coping in spousal caregivers following a traumatic spinal cord injury (Dickson et al., 2012). It is our intention that this IPA study fits with this high-quality IPA research recently published and continues to highlight how IPA can address important research questions in clinical health psychology.
Methods Study design IPA is a qualitative methodology that seeks to understand experiences from the perspective of the individual participant by examining how they make sense of major life experiences. Participants were interviewed utilising a semistructured interview schedule. This consisted of open-ended questions starting broadly, but focussing on the experience of having an awake craniotomy specifically, rather than any other aspect of treatment or diagnosis.
Setting Participants were recruited from a regional neurooncology service in the North-West England.
Participants Participants were identified by the Neurooncology multidisciplinary team (MDT) and asked for consent for a researcher (E.H.) to contact them who then completed the formal consenting process. The researcher was not a member of the clinical team, although she had met with
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Howie et al. some of the participants during a separate aspect of research looking at neuropsychological outcomes. This was a prospective study in which all patients undergoing an awake craniotomy with cortical and subcortical language mapping during the 2 year recruitment period were invited to participate. In total seven people were invited to participate. One person initially expressed interest in participating but withdrew their consent prior to being interviewed, and as such, six interviews were completed. Semi-structured interviews were completed between 6 and 16 weeks, with most occurring at 12–14 weeks. Interviews were conducted at a location of the participant’s choosing – most within participants’ homes and one interview was conducted within the hospital outpatients’ department. One participant was interviewed at 6 weeks shortly before commencing chemotherapy. It was felt important to interview participants at a point they were not undergoing other treatments in order to focus on the experience of surgery specifically. Consideration was given to interviewing participants at different times pre- and post-surgically, but it was felt that pre-surgically this would be too burdensome and may have interfered with the aims of understanding patient experiences during the normal patient journey. All participants met with the clinical neuropsychologist pre- and post-surgery who screened for symptoms of anxiety and depression with the Hospital Anxiety and Depression Scale (HADS) as well as clinical interview, which included questions about trauma history and traumatic symptoms. One person was offered appropriate intervention by their neuropsychologist for their anxious symptoms. No other significant concerns regarding mood were identified.
Study size When considering sample size for IPA studies, Smith and Osborne (2008) advocate smaller numbers as central to the analysis is a detailed and interpretative account which is timeconsuming and only realistically achievable with small samples. IPA places importance on homogeneity of groups; the six participants,
therefore, represent a highly homogeneous group, the same procedure, surgeon, institution, with the input from the same clinical neuropsychologist before, during and after surgery.
Ethics approval Ethical approval for the study was obtained from the Local Research Ethics Committee. Personal details discussed in the interviews were changed to preserve anonymity. Participants were aware that the centre would be named and provided written consent for verbatim quotes to be used for publication.
Results Interviews were conducted, tape-recorded and transcribed by the same researcher (E.H.). Interviews were analysed in line with IPA guidance (Smith et al., 2009). Each interview was analysed individually and themes identified. IPA places particular emphasis on phenomenology; using participants’ own words is particularly important (Table 1). However, the researcher’s own interpretation of transcripts along with awareness of psychological theories is also central to the analysis. Often called the double hermeneutic process, the participant is attempting to make sense of their world, while the researcher is trying to understand their meaning (Smith and Osborne, 2008). The first author (E.H.) completed all aspects of the analysis, but as emergent themes were identified these were discussed at length between the authors, and all transcripts were read in full by at least two researchers. The possibility of gathering participant feedback was discussed, but it was decided that this would not be appropriate in this situation. Given the time elapsed between surgery and completion of the first stage of analysis, it was possible that participants’ experience of surgery may themselves have been altered. Themes from all interviews were brought together and superordinate themes were identified which attempt to identify higher order concepts present across all interviews. Figure 1 illustrates the relationships between ordinate
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Table 1. Participants. Pseudonym
Age (years)
Ethnic origin
Employment status
Time since diagnosis
Tumour location
Sam Chris Jamie Nicky Alex Jo
40–50 50–60 40–50 30–40 30–40 30–40
White British White British White British White British White British White British
Not working Full-time Full-time Full-time Full-time Part-time
2 years 17 months 16 months 8 weeks 3 years 7 years
Left medial posterior frontal Left temporal/insular Left posterior temporal Left frontal Left frontal Left posterior frontal
and superordinate themes, and these will be explored individually below. Throughout the analysis, the impact of the tumour remained at the forefront of the researcher’s interpretation and analysis. All participants had tumours in eloquent areas, with the inherent risk of disruption to language functioning both pre- and, more significantly, post-operatively. Not only did this impact on aspects such as the perception of choice in respect to treatment options, and indeed several participants reported a sense of not having a choice – surgery was the only option. In addition to this, and more challenging to the analysis, was the potential impact of the tumour on fluency. Dysfluency was a notable feature throughout the interviews; however, it was not simple to analyse. Dysfluency while describing particular aspects could be indicative of the emotional impact of the topic; however, it could also be related to post-surgical dysphasia. As such, particular note was taken of times when people appeared dysfluent and in particular the topic of conversation during such times, and it appeared that there were specific aspects of participants’ experiences that consistently evoked dysfluency during otherwise fluent interviews. Although not themes in themselves, the impact of the tumour and resulting dysfluency have been included in the diagram because of the relationship they have on the identified themes. Three superordinate themes were identified. It is possible to think about the three themes in a linear form – with a shift from the internal through to the external experiences,
mechanisms and processes as you move down. The themes have been described below in reverse order – starting at the bottom of the diagram and working up. Both in the process of analysis and in the nature of describing these themes to the reader, it is necessary to understand the other themes of dissociation and control and responsibility before the less clearly articulated theme of fear became clear. Each theme and its subthemes are explored under separate headings below.
Control and responsibility Control and responsibility were so intertwined they were most clearly understood as one theme. Throughout the analysis, an inherent tension was present between the desire for control and the associated responsibility that could accompany it. People talked positively about being in control and found the lack of control difficult; however, with an increased sense of control for some aspects of their experiences also came a sense of responsibility for the outcome. It is related to the external aspects of the experience, such as relationships, choices (both offered and perceived) and information – aspects of the experience which were not internal coping mechanisms per se, but which influenced the individual’s ability to cope with the experiences which were perceived as fundamentally threatening. Many of the examples of control and responsibility relate to aspects of the experience outside of the surgery itself: preparing for surgery, coping after surgery and recovery.
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Figure 1. Model of the lived experience of undergoing an awake craniotomy using the Duffau technique.
Control/lack of control I obviously knew there was nothing I could do about it. (Nicky: 37)
and after surgery. Conversely, participants also reported experiences of being out of control, for instance feeling like an object being done unto:
Control, or the lack of it, was a recurrent theme. Participants attempted to assert control over their situation in a variety of ways before, during
But you know, looking, reflecting, you know, the pain that I experienced being stitched up erm, I wouldn’t have thought that I would have been able to, you know, lie there and you know let
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Journal of Health Psychology them do it basically, you know do the procedure. (Jo: 489–491)
At times, participants struggled to articulate their experiences, and the lack of control appeared to link to an underlying fear. During surgery itself, control appeared to manifest in terms of choice, information and responsibility, which will be explored in more detail below. Although control was generally perceived to be positive, there was a drawback, the risk of perceiving responsibility; responsibility for the outcome of your own brain tumour surgery is not necessarily positive. Alex had the unusual experience of having undergone two awake craniotomies. The first was not perceived positively. It was carried out prior to the commencement of cortical and subcortical mapping at the centre and without a neuropsychologist involved: Erm, on the first one I asked to be put back under because I really, really panicked, erm … and I had to be put back under, erm, because it felt like, erm, someone was tugging at my, and I know it can’t be possible, but someone was tugging at my brain [laugh] [EH: Mmm] So I think that was the reason why I lost, why they had to do some of the surgery erm, whilst I was under, so that made it, That was possibly the reason why I lost some of me erm, speech. (Alex: 371–384)
Alex blamed his inability to cope, his panic in theatre, for the resulting aphasia he experienced following surgery. Throughout his interview, Alex reflected on the differences in his experiences of his two awake craniotomies, for instance, the potentially overwhelming emotional experience in surgery, the importance of preparing for this in advance and having someone in theatre to support this process. Alex’s extract above also uses exceptionally vivid language, the sense of someone tugging at one’s brain is a powerful use of language and links to the vivid and visceral descriptions that will be described below. This passage illustrates the interplay between the themes; Alex’s sense of responsibility related to his vivid description of his experiences, which in turn illuminated something of what it was he was afraid of.
Choice It had to be done that there was no option. (Sam: 20)
Choice and lack of choice can be almost directly mapped onto control and lack of control. The perception of one leads to that of the other. However, although there was choice about whether or not to have surgery, it was a Hobson’s choice – either have an awake craniotomy or don’t have surgery. For several participants, they had lived with their diagnosis for months or even years, often without treatment, because of the risk from surgery to eloquent functions. The possibility of surgery was therefore seen in a positive light, and although the choice was a forced one, it remained a choice and one that brought a sense of control through choosing to act. However, it was not just in the decision to have surgery where choice was discussed. During the operation itself people were able to exercise choice, for instance did they want to stay awake or not during the final stage of surgery: I remember being asked about whether I wanted to be anaesthetised at the end of it. And this was, I still don’t know, I suppose. Because I said I would like some sedation because I know, I know I’m not going to go to sleep and I thought, I just want to just, It was, it was … I … w … I was uncomfortable where I was [EH: Yeah] Positioned and I said no I just want to be, go to sleep. (Jamie: 82–87)
Jamie’s description appears dysfluent, she seemed to struggle to describe how she was feeling and what was difficult about her experience; her description of the choice to go to sleep seemed to be a way to take control of the situation and was seen as a positive choice. Providing a role for patients during surgery was one way of enabling them to feel in control, to exercise choice and furthermore to act as a distraction from the more threatening aspects of this experience feeding into the ‘bubble of dissociation’ theme discussed below.
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Howie et al. Information/preparation I had the information that I needed to deal with that. (Jamie: 10)
The importance of information in preparing for surgery was discussed in detail throughout all six interviews. Accurate and reliable information was clearly of central importance to participants’ ability to cope with surgery. However, there was a limit to what some participants wanted to know – they wanted to be well informed, but did not want to visualise this too vividly. This linked to choice and control as described above as participants recalled the importance of having information in order to make informed choices. When detailed information was not readily available, it was sought out and people took control of their own preparation by researching what it would be like to have an awake craniotomy. Jo implies that without this preparation she may have panicked: I knew all that before, I’d been prepared. So, she said, you obviously, when she touches part of your brain, you know you won’t be able to get any words out, but you know, don’t panic, it’s normal. So by being told what was normal and not normal I didn’t panic. (pp. 367–370)
Normal is an interesting word; it was used in five of the six interviews, either in relation to ‘returning to normal’ following surgery, clearly implying the lack of normality in and around surgery, or, as above, in respect to the surgery itself. It is particularly interesting in this context as there is something incongruous in thinking about normality in the context of having an awake craniotomy, in what is likely to be viewed as an abnormal situation by most people. Having sufficient information to prepare for the experience of surgery and the potential impact of surgery appeared to be extremely important. And closely related to this was the relationship with the team. Building a relationship with the team She got to know me and I feel […] we’ve got a relationship. (Jo: 306)
The way individuals related to the surgical team was of particular interest, as many of the professionals involved in awake craniotomy surgery will have spent much of their careers operating on people who are under general anaesthetic. A number of participants talked at length about their trust in the team, sometimes locating this more in one member of the team than others. Most often it was the surgeon whom people talked about in terms of trust; sometimes this seemed to be a blind trust, giving no reasoning as to why the surgeon was trusted; it was simply presented as a fact. Other people described a process of building a trusting relationship. All participants described that a trusting relationship with those responsible for the surgery (be it the surgeon or another pivotal member of the team) was important when deciding to have surgery. The successful building of this relationship appeared to enable participants to cope with the experience of surgery. The ability to concentrate on a person (often the neuropsychologist) rather than the procedure was particularly important. It helped with preparation for the experience of surgery, and the psychologist not only undertook language assessment but had a key role supporting emotional functioning. The bubble of dissociation So, it was as though … I think at one point I felt I was dreaming. (Chris: 46–47)
Coping with the experience of surgery was, unsurprisingly, a theme throughout the interviews. Different people coped in different ways and with differing degrees of success. A common thread was the sense of people feeling as if they were detached from their experiences in some way. Much thought was given to describing this experience; it seemed as if people were attempting to build and preserve a bubble around them during surgery to detach themselves from the experience of surgery itself. A word like dissociation carries with it many preconceived ideas. It is used in several very different psychological theories and much thought
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was given to the use of the word in this context. Despite the obvious drawbacks of using such an emotive word, it was not possible to capture the breadth of this theme through another word. Detachment is only one aspect of this; it also includes a sense of unreality, depersonalisation, compartmentalisation and incongruity It appeared that dissociation was a mechanism for coping with the fear described above, rather than engaging with the reality of the surgery itself and the associated fear of the loss of self. At times, this process appeared to begin to break down, and descriptions of the experience became vivid and visceral and hints of the underlying fear became more apparent. Posttraumatic stress disorder (PTSD) can only be diagnosed 6 months following a traumatic incident as prior to this time, symptoms may be part of normal emotional processing. However, given the association between dissociation and PTSD, this was a concern. It is important to highlight that none of the participants exhibited any other traumatic symptoms either during this study or during follow-ups by their neuropsychologist, and dissociation alone would not be sufficient to diagnose PTSD. Developing this ‘bubble of dissociation’ did not always happen easily. This appeared related to times when people became less fluent in their descriptions, glossing over aspects that were more difficult or becoming hesitant and uncertain. It seems to link to the process of construing a sense of normality despite the fundamentally abnormal situation; if one can reassure oneself that what is happening is normal, the bubble of dissociation can be preserved. Avoidance and a focus on the positive I’ve not really worried about it to be honest. (Chris: 17)
Avoidance and a focus on the positive were recurrent themes throughout the interviews and differed from other subthemes as it often appeared to be a deliberate and conscious choice, whereas other aspects of the bubble of dissociation did not appear to be so volitional.
Difficulty articulating experience. A further subtheme was the difficulty participants had in articulating their experiences. Some participants were able to identify this difficulty: I don’t … [long pause] … I struggle really … finding the … the feel … how to describe, how to describe these things. (Alex: 191–192)
Other examples include otherwise fluent and eloquent interviews becoming dysfluent and hesitant, as if struggling to find the words to describe the experience. Alternatively, sudden shifts in the topic of conversation were noticed, as if suddenly shifting to focussing on the positive again. Unemotional/clinical detachment You know, erm, better oncological outcome. (Jo: 33)
At times, participants utilised quite unemotional and clinical descriptions of their experiences. Sometimes participants rushed through their descriptions, particularly during the description of surgery itself and at times, the passage of time appeared distorted, with the surgical experience taking only a few minutes. Incongruous emotion it felt like […] someone was tugging at my brain [laugh]. (Alex: 378–379)
Although closely linked to focussing on the positive, which appeared to be a general strategy for coping with their broader experiences, incongruous emotions appeared to occur almost exclusively during descriptions of surgery itself. It seemed as if participants were laughing off the negative aspects of their experiences when they became too overwhelming, when the bubble of dissociation began to burst and when, even if only for a moment, they were no longer detached and separate from the reality of surgery but vividly and viscerally there: Because you’re feeling water trickling on your head and you’re thinking that’s open that (laughing)
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Howie et al. you know, my skulls open and it’s, you know, going on my brain, you know sort of thing, weird. (Jamie: 271–273)
In this extract, Jamie clearly has a very vivid image of what is happening in surgery and, for a moment, the bubble bursts. But quickly, she begins to describe experience in a more detached way. This theme is very closely linked to the vivid and visceral descriptions below, as much as it is connected to focussing on the positive, and demonstrates the interaction between and the inherent tension of preserving the bubble of dissociation while experiencing something fundamentally threatening. Vivid/visceral description Yeah, you know like … urrghh! [pause] just looking in somebody’s head, it … it … I’m not, don’t get me wrong, I, I, I’m not … you know, blood and gore and all that business, it’s not like, ewww … I’m not squeamish, you know, but yeah, the thought of … somebody tinkering around up there … (Jo: 117–120)
Jo was unable to describe exactly what disturbed her about this thought, she cannot explain how she feels, she is dysfluent and her description has a visceral sense – a whole body experience that is difficult to describe in words. Tinkering around is such a powerful use of words, the sense that somehow this process is clumsy and the outcome uncertain. Uncertainty of outcome in combination with the myriad of roles of the brain conjures a fundamentally threatening and difficult to articulate experience. For some participants, sensations such as temperature or sounds appeared to jar the detached narrative, for instance, a noise appeared to be associated with a somewhat nightmarish description of shadows on walls for one participant who quickly moves on to dismiss and minimise her negative experiences: When I was actually woken up ermm I can remember the noise of what … I don’t know what they were using ermm but I can remember the noise and it was … where it was it was right in my ear and it was very noise ermm and I could see the
shadow of [the surgeon] on the wall when she moved but there was no pain and there was nothing that I thought of … cause I was doing the pictures on the computer … and that seemed to take your mind off whatever was going on. So, there was no problems there at all. (Chris: 81–86)
The (unspoken) fear. Overarching all aspects of the analysis was this sense of a fear that was fundamentally difficult to articulate. Perhaps more than other functions, the loss of language is particularly scary: So this one was scary because I actually knew that everything, I was totally aware of everything that was going on around me. But (pause) I couldn’t speak. (Alex: 234–235)
Language is such a fundamental aspect of what makes us human. The fear of being left unable to communicate may be a fear of losing something of what it is that makes one human. Another participant articulated the fact that the brain controls so much, so how did one truly understand the risks? She felt prepared that she might lose her speech, but when she struggled to urinate following surgery, she worried this might be a form of brain damage. This is understandable; the brain is responsible for everything that makes us who we are and is so complex that it remains a mystery to most people. The experience of having an awake craniotomy evokes powerful responses. The sense of ‘tinkering’ with your brain, of playing around with the thing that makes you who you are, is fundamentally threatening. Furthermore, the threat is not easily describable; it is not as simple as the loss of a function, but potentially the loss of some aspect of who you are and who knows what aspect that might be. It could be in terms of language, or it could be the unknown impact surgery may have on other aspects of one’s personality or identity – the loss of self.
Summary The fundamental and overarching fear is very difficult to articulate and difficult to tolerate in surgery. In order to do this, participants
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created a bubble of dissociation to separate themselves from this inherent and unspeakable fear. Various things sustained this bubble. Avoidance appeared at times a deliberate strategy to prepare for or cope with some aspects of the experience, particularly before or after surgery. During surgery, dissociation from the experience did not appear to be something participants were doing intentionally. Dissociation appeared to be a more automatic defence, something to enable participants to detach from and cope with the experience of surgery itself. In order to sustain the bubble of dissociation, participants sometimes needed additional support, particularly when the vivid and visceral reality of the experience threatened to overwhelm; the relationship with the team, particularly the neuropsychologist, enabled participants to tolerate the surgery and reestablish the bubble of dissociation. Describing the threat was difficult; it appeared to provoke greater dysfluency than other aspects of the interview. This was particularly evident when describing the vivid and visceral aspects of the experience, which were sometimes avoided or glossed over but at other times laughed off with incongruent affect or described in an unemotional and cold way. The vivid or visceral descriptions perhaps gave the clearest insight into the unspoken threat, the evocative and powerful descriptions conjuring at times nightmarish images The extent to which the participants felt in control of their experiences also contributed to their ability to cope with fear. Building relationships and trusting staff both contributed to a sense of control but also helped to preserve a bubble of dissociation during surgery. Sensitive responses from staff enabled participants to cope with threatening experiences, not least with respect to relationships with the neuropsychologist who was not only involved in language assessment during surgery but was also able to monitor and bolster the emotional functioning of patients. Having appropriate information was also central in enabling participants to feel prepared for surgery and again helping to prepare for those aspects that would be most
threatening, further preserving the bubble of dissociation.
Discussion The purpose of patients undergoing awake craniotomy with language mapping is to be able to identify essential language areas in order to preserve function while ensuring the maximum degree of tumour resection. For this purpose, language assessment is usually completed by a neuropsychologist or a speech therapist with specialist training in the procedure. Previous research regarding awake craniotomy has primarily focussed on safety and clinical outcomes along with technical descriptions and refinements. This study focussed on patient’s lived experience of awake craniotomy and identified a number of previously overlooked aspects of this experience, most notably the emotional strain of undergoing such a participative and potentially threatening experience. This study highlights the less widely acknowledged but essential clinical role of supporting a patient’s emotional functioning during surgery, both for the wellbeing of the patient and to maximise patient participation in the functional language mapping assessment. Within this, the study highlights how the role of the neuropsychologist within theatre is multifaceted and requires complex and fine-tuned assessment of language functioning, anxiety and fatigue, to judge when participants require a break or to press on with the assessment and when emotional containment is needed. The combination of language assessment and specialist psychological assessment/intervention skills makes a neuropsychologist ideally placed to fulfil several roles in the perioperative care of patients undergoing awake craniotomy. The patients who had undergone this procedure highlighted how important it was for them to be prepared for the procedure, to know what to expect and to have a sense of control over the process without feeling responsible for the outcome. Maintaining a ‘bubble of dissociation’ was central in enabling participants to remain participative and alert during surgery while
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Howie et al. feeling in safe hands. Providing patients with a role in surgery serves to increase the sense of control and choice but also provided a less threatening focus for patients which helped to maintain the ‘bubble of dissociation’. Preserving this bubble creates an additional role for members of the surgical team, who will be more accustomed to working with surgical patients under general anaesthetic. New clinical roles include the following: •• The neurosurgeon, anaesthetist and neuropsychologist orientating the patient regarding all aspects of the awake surgery, including any difficult aspects and potential risks prior to the surgery; •• Having a trained and dedicated neuropsychologist/speech therapist to complete language mapping assessment during surgery; •• Preparation by the neuropsychologist prior to surgery provides a clear role for patients in surgery by being an active participant in language testing; •• Ensuring positive and open communication between the surgical team and the patient before, during and after surgery. This requires the clinical team to meet regularly to discuss, prepare and de-brief regarding awake craniotomy cases; •• Having someone in theatre dedicated to monitoring and supporting the emotional wellbeing of the patient. In this study this was undertaken by the neuropsychologist. One aspect of qualitative research, which can be seen as a major criticism, is the limited numbers of participants and generalisability of findings. However, by restricting sample sizes, each interview could be analysed in detail and individual experiences captured. IPA attempts to understand the experiences of individuals, and homogeneity of groups is important; it does not seek to broadly generalise. However, one of the strengths of this study was achieving both homogeneity and representativeness of the sample. By restricting recruitment to a single and rare procedure, and inviting all patients to
participate, this enabled a far more representative sample than is normally possible with small qualitative studies. While it is difficult to know how applicable this research is to similar procedures, for instance awake craniotomy with cortical mapping only, it is considered that clinical services offering similar awake procedures would also benefit from an evaluation of clinical roles to ensure that patients’ psychological wellbeing and maximum participation during surgery are achieved. Funding This research received no specific grant from any funding agency in the public, commercial or not-forprofit sectors.
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Duffau H, Capelle L, Lopes M, et al. (2000) The insular lobe: Physiopathological and surgical considerations. Neurosurgery 47(4): 801–810. Duffau H, Gatignol P, Mandonnet E, et al. (2008) Intraoperative subcortical stimulation mapping of language pathways in a consecutive series of 115 patients with Grade II glioma in the left dominant hemisphere. Journal of Neurosurgery 109(3): 461–471. DOI: 10.3171/ jns/2008/109/9/0461. Duffau H, Lopes M, Arthuis F, et al. (2005) Contribution of intraoperative electrical stimulations in surgery of low grade gliomas: A comparative study between two series without (1985–96) and with (1996–2003) functional mapping in the same institution. Journal of Neurology Neurosurgery and Psychiatry 76(6): 845–851. DOI: 10.1136/jnnp.2004.048520. Hilgart J, Mercer J and Thirlaway K (2013) Individuals’ experiences of, and responses to, a negative genetic test result for familial hypercholesterolaemia. Journal of Health Psychology 18: 339–349. Khu KJ, Doglietto F, Radovanovic I, et al. (2010) Patients’ perceptions of awake and outpatient
craniotomy for brain tumor: A qualitative study. Journal of Neurosurgery 112(5): 1056–1060. DOI: 10.3171/2009.6.JNS09716. Manninen PH, Balki M, Lukitto K, et al. (2006) Patient satisfaction with awake craniotomy for tumor surgery: A comparison of remifentanil and fentanyl in conjunction with propofol. International Anesthesia Research Society 102: 237–242. DOI: 10.1213/01.ANE.0000181287.86811.5C. Palese A, Skrap M, Fachin M, et al. (2008) The experience of patients undergoing awake craniotomy: In the patients’ own words. A qualitative study. Cancer Nursing 31(2): 166–172. DOI: 10.1097/01.NCC.0000305699.97625.dc. Smith JA and Osborne M (2007) Interpretative phenomenological analysis. In: Smith JA (ed.) Qualitative Psychology: A Practical Guide to Research Methods. London: SAGE, pp. 51–81. Smith JA, Flowers P and Larkin M (2009) Interpretative Phenomenological Analysis: Theory, Method and Research. London: SAGE. Williams EF, Gannon K and Soon K (2011) The experiences of young people with Epidermolysis Bullosa Simplex: A qualitative study. Journal of Health Psychology 16: 701–710.
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HPQ0010.1177/1359105315581513Journal of Health PsychologyHowie et al.
Article
Patient experiences of awake craniotomy: An Interpretative Phenomenological Analysis
Journal of Health Psychology 1–12 © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1359105315581513 hpq.sagepub.com
Emma Howie1,2, Jacki Bambrough2,3, Konstantina Karabatsou3 and John RE Fox4,5
Abstract Awake craniotomy with language mapping enables maximum resection of tumours in eloquent areas while preserving function. This study aims to understand the lived experiences of those undergoing an awake craniotomy. Six participants who underwent awake craniotomy were interviewed, and the data were analysed using Interpretative Phenomenological Analysis. Themes were identified as ‘Unspeakable Fear’, ‘Dissociation’ and ‘Control and Responsibility’. Participants discussed how surgery was a threat to the sense of self. Dissociation during surgery operated as a protective mechanism, while the surgical team all had roles in maintaining this bubble of dissociation, such as being a support to the patient’s emotional needs.
Keywords cancer, clinical health psychology, Interpretative Phenomenological Analysis, intervention, neurosurgery
Introduction Although rare, brain tumours often have a multifaceted impact on an individual’s biopsychosocial wellbeing. Historically, treatment in socalled eloquent areas of the brain, areas essential to language, movement or sensation, has been limited due to the risks to these functions. Awake craniotomy with cortical and subcortical language mapping, a surgical paradigm described by Duffau et al. (2005), is one of the few advances in neurosurgery to offer treatment to these types of tumours. Research has demonstrated that it is possible to resect tumours in eloquent cortex that would have previously been considered inoperable, thereby maximising the benefit to risk ratio of surgery (De Benedictis et al., 2010; Duffau, 2000; Duffau et al., 2000). Duffau et al. (2008) report that tumour resection without a safety margin may
result in transient language impairment immediately following surgery; however, this is rarely permanent and the vast majority of patients’ language skills return to baseline by 3 months post-surgery. Awake craniotomy with cortical and subcortical language mapping, therefore, allows tumours in
1Royal
Manchester Children’s Hospital, UK University of Manchester, UK 3Salford Royal Hospital, UK 4University of London, UK 5Barnet, Enfield and Haringey Mental Health NHS Trust, UK 2The
Corresponding author: John RE Fox, Department of Psychology, Royal Holloway University of London, Egham Hill, Egham, Surrey TW20 0EX, UK. Email: [email protected]
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eloquent areas to be substantially resected while preserving language functioning, increasing survival and enabling patients to retain social and professional functioning (Benzagmout et al., 2007; De Benedictis et al., 2010). Cortical and subcortical language mapping approaches require a high level of participation from the patient throughout a lengthy surgical procedure. In practice, this means that a neuropsychologist sits with the patient in the operating theatre and undertakes specific neuropsychological tasks to map specific sites within the brain during the operation. There is a paucity of research exploring the lived experience of patients undergoing this procedure. Research relating to awake craniotomy with language mapping has focussed mainly on medical outcomes and the incidence of language impairment following surgery. The few qualitative studies examining awake craniotomy are varied in methodology and scope. One theme repeated throughout the literature is the importance of trust in one’s surgeon (Bernstein et al., 2004; Khu et al., 2010). However, the richness of data varies depending on methodology (questionnaire vs structured interview vs semi-structured interview, open vs closed questioning, etc). Research looking at satisfaction with rather than experiences of surgery can be interesting but is inherently limited in scope (Danks et al., 1998; Manninen et al., 2006). Furthermore, some studies have conducted interviews while patients were still in hospital with little time to reflect (Bernstein et al., 2004; Khu et al., 2010; Palese et al., 2008). The aim of this study is to develop our understanding of the experience of having an awake craniotomy at the first UK centre to adopt the Duffau paradigm. Previous research has primarily focussed on the clinical and bodily processes, with little consideration of how this is experienced and made sense of by the patient. Awake craniotomy with cortical and subcortical mapping remains a novel procedure, and in order to complete this mapping process, patients are required to be fully participative throughout what can be a long and protracted surgical procedure. The impact of this and the way in which this experience is understood and managed by the patient have not been explored in detail, and
this study aims to explore the lived experiences of individuals who have had an awake craniotomy with cortical and subcortical language mapping. There is a growing use of Interpretative Phenomenological Analysis (IPA) within health psychology, such as Hilgart et al.’s (2013) research into individuals’ experiences of negative genetic test result for familial hypercholesterolaemia and Williams et al.’s (2011) study of the experiences of young people with epidermolysis bullosa simplex. Indeed, research has started to use IPA with more neurological conditions, such as with adjustment and coping in spousal caregivers following a traumatic spinal cord injury (Dickson et al., 2012). It is our intention that this IPA study fits with this high-quality IPA research recently published and continues to highlight how IPA can address important research questions in clinical health psychology.
Methods Study design IPA is a qualitative methodology that seeks to understand experiences from the perspective of the individual participant by examining how they make sense of major life experiences. Participants were interviewed utilising a semistructured interview schedule. This consisted of open-ended questions starting broadly, but focussing on the experience of having an awake craniotomy specifically, rather than any other aspect of treatment or diagnosis.
Setting Participants were recruited from a regional neurooncology service in the North-West England.
Participants Participants were identified by the Neurooncology multidisciplinary team (MDT) and asked for consent for a researcher (E.H.) to contact them who then completed the formal consenting process. The researcher was not a member of the clinical team, although she had met with
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Howie et al. some of the participants during a separate aspect of research looking at neuropsychological outcomes. This was a prospective study in which all patients undergoing an awake craniotomy with cortical and subcortical language mapping during the 2 year recruitment period were invited to participate. In total seven people were invited to participate. One person initially expressed interest in participating but withdrew their consent prior to being interviewed, and as such, six interviews were completed. Semi-structured interviews were completed between 6 and 16 weeks, with most occurring at 12–14 weeks. Interviews were conducted at a location of the participant’s choosing – most within participants’ homes and one interview was conducted within the hospital outpatients’ department. One participant was interviewed at 6 weeks shortly before commencing chemotherapy. It was felt important to interview participants at a point they were not undergoing other treatments in order to focus on the experience of surgery specifically. Consideration was given to interviewing participants at different times pre- and post-surgically, but it was felt that pre-surgically this would be too burdensome and may have interfered with the aims of understanding patient experiences during the normal patient journey. All participants met with the clinical neuropsychologist pre- and post-surgery who screened for symptoms of anxiety and depression with the Hospital Anxiety and Depression Scale (HADS) as well as clinical interview, which included questions about trauma history and traumatic symptoms. One person was offered appropriate intervention by their neuropsychologist for their anxious symptoms. No other significant concerns regarding mood were identified.
Study size When considering sample size for IPA studies, Smith and Osborne (2008) advocate smaller numbers as central to the analysis is a detailed and interpretative account which is timeconsuming and only realistically achievable with small samples. IPA places importance on homogeneity of groups; the six participants,
therefore, represent a highly homogeneous group, the same procedure, surgeon, institution, with the input from the same clinical neuropsychologist before, during and after surgery.
Ethics approval Ethical approval for the study was obtained from the Local Research Ethics Committee. Personal details discussed in the interviews were changed to preserve anonymity. Participants were aware that the centre would be named and provided written consent for verbatim quotes to be used for publication.
Results Interviews were conducted, tape-recorded and transcribed by the same researcher (E.H.). Interviews were analysed in line with IPA guidance (Smith et al., 2009). Each interview was analysed individually and themes identified. IPA places particular emphasis on phenomenology; using participants’ own words is particularly important (Table 1). However, the researcher’s own interpretation of transcripts along with awareness of psychological theories is also central to the analysis. Often called the double hermeneutic process, the participant is attempting to make sense of their world, while the researcher is trying to understand their meaning (Smith and Osborne, 2008). The first author (E.H.) completed all aspects of the analysis, but as emergent themes were identified these were discussed at length between the authors, and all transcripts were read in full by at least two researchers. The possibility of gathering participant feedback was discussed, but it was decided that this would not be appropriate in this situation. Given the time elapsed between surgery and completion of the first stage of analysis, it was possible that participants’ experience of surgery may themselves have been altered. Themes from all interviews were brought together and superordinate themes were identified which attempt to identify higher order concepts present across all interviews. Figure 1 illustrates the relationships between ordinate
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Table 1. Participants. Pseudonym
Age (years)
Ethnic origin
Employment status
Time since diagnosis
Tumour location
Sam Chris Jamie Nicky Alex Jo
40–50 50–60 40–50 30–40 30–40 30–40
White British White British White British White British White British White British
Not working Full-time Full-time Full-time Full-time Part-time
2 years 17 months 16 months 8 weeks 3 years 7 years
Left medial posterior frontal Left temporal/insular Left posterior temporal Left frontal Left frontal Left posterior frontal
and superordinate themes, and these will be explored individually below. Throughout the analysis, the impact of the tumour remained at the forefront of the researcher’s interpretation and analysis. All participants had tumours in eloquent areas, with the inherent risk of disruption to language functioning both pre- and, more significantly, post-operatively. Not only did this impact on aspects such as the perception of choice in respect to treatment options, and indeed several participants reported a sense of not having a choice – surgery was the only option. In addition to this, and more challenging to the analysis, was the potential impact of the tumour on fluency. Dysfluency was a notable feature throughout the interviews; however, it was not simple to analyse. Dysfluency while describing particular aspects could be indicative of the emotional impact of the topic; however, it could also be related to post-surgical dysphasia. As such, particular note was taken of times when people appeared dysfluent and in particular the topic of conversation during such times, and it appeared that there were specific aspects of participants’ experiences that consistently evoked dysfluency during otherwise fluent interviews. Although not themes in themselves, the impact of the tumour and resulting dysfluency have been included in the diagram because of the relationship they have on the identified themes. Three superordinate themes were identified. It is possible to think about the three themes in a linear form – with a shift from the internal through to the external experiences,
mechanisms and processes as you move down. The themes have been described below in reverse order – starting at the bottom of the diagram and working up. Both in the process of analysis and in the nature of describing these themes to the reader, it is necessary to understand the other themes of dissociation and control and responsibility before the less clearly articulated theme of fear became clear. Each theme and its subthemes are explored under separate headings below.
Control and responsibility Control and responsibility were so intertwined they were most clearly understood as one theme. Throughout the analysis, an inherent tension was present between the desire for control and the associated responsibility that could accompany it. People talked positively about being in control and found the lack of control difficult; however, with an increased sense of control for some aspects of their experiences also came a sense of responsibility for the outcome. It is related to the external aspects of the experience, such as relationships, choices (both offered and perceived) and information – aspects of the experience which were not internal coping mechanisms per se, but which influenced the individual’s ability to cope with the experiences which were perceived as fundamentally threatening. Many of the examples of control and responsibility relate to aspects of the experience outside of the surgery itself: preparing for surgery, coping after surgery and recovery.
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Figure 1. Model of the lived experience of undergoing an awake craniotomy using the Duffau technique.
Control/lack of control I obviously knew there was nothing I could do about it. (Nicky: 37)
and after surgery. Conversely, participants also reported experiences of being out of control, for instance feeling like an object being done unto:
Control, or the lack of it, was a recurrent theme. Participants attempted to assert control over their situation in a variety of ways before, during
But you know, looking, reflecting, you know, the pain that I experienced being stitched up erm, I wouldn’t have thought that I would have been able to, you know, lie there and you know let
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At times, participants struggled to articulate their experiences, and the lack of control appeared to link to an underlying fear. During surgery itself, control appeared to manifest in terms of choice, information and responsibility, which will be explored in more detail below. Although control was generally perceived to be positive, there was a drawback, the risk of perceiving responsibility; responsibility for the outcome of your own brain tumour surgery is not necessarily positive. Alex had the unusual experience of having undergone two awake craniotomies. The first was not perceived positively. It was carried out prior to the commencement of cortical and subcortical mapping at the centre and without a neuropsychologist involved: Erm, on the first one I asked to be put back under because I really, really panicked, erm … and I had to be put back under, erm, because it felt like, erm, someone was tugging at my, and I know it can’t be possible, but someone was tugging at my brain [laugh] [EH: Mmm] So I think that was the reason why I lost, why they had to do some of the surgery erm, whilst I was under, so that made it, That was possibly the reason why I lost some of me erm, speech. (Alex: 371–384)
Alex blamed his inability to cope, his panic in theatre, for the resulting aphasia he experienced following surgery. Throughout his interview, Alex reflected on the differences in his experiences of his two awake craniotomies, for instance, the potentially overwhelming emotional experience in surgery, the importance of preparing for this in advance and having someone in theatre to support this process. Alex’s extract above also uses exceptionally vivid language, the sense of someone tugging at one’s brain is a powerful use of language and links to the vivid and visceral descriptions that will be described below. This passage illustrates the interplay between the themes; Alex’s sense of responsibility related to his vivid description of his experiences, which in turn illuminated something of what it was he was afraid of.
Choice It had to be done that there was no option. (Sam: 20)
Choice and lack of choice can be almost directly mapped onto control and lack of control. The perception of one leads to that of the other. However, although there was choice about whether or not to have surgery, it was a Hobson’s choice – either have an awake craniotomy or don’t have surgery. For several participants, they had lived with their diagnosis for months or even years, often without treatment, because of the risk from surgery to eloquent functions. The possibility of surgery was therefore seen in a positive light, and although the choice was a forced one, it remained a choice and one that brought a sense of control through choosing to act. However, it was not just in the decision to have surgery where choice was discussed. During the operation itself people were able to exercise choice, for instance did they want to stay awake or not during the final stage of surgery: I remember being asked about whether I wanted to be anaesthetised at the end of it. And this was, I still don’t know, I suppose. Because I said I would like some sedation because I know, I know I’m not going to go to sleep and I thought, I just want to just, It was, it was … I … w … I was uncomfortable where I was [EH: Yeah] Positioned and I said no I just want to be, go to sleep. (Jamie: 82–87)
Jamie’s description appears dysfluent, she seemed to struggle to describe how she was feeling and what was difficult about her experience; her description of the choice to go to sleep seemed to be a way to take control of the situation and was seen as a positive choice. Providing a role for patients during surgery was one way of enabling them to feel in control, to exercise choice and furthermore to act as a distraction from the more threatening aspects of this experience feeding into the ‘bubble of dissociation’ theme discussed below.
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Howie et al. Information/preparation I had the information that I needed to deal with that. (Jamie: 10)
The importance of information in preparing for surgery was discussed in detail throughout all six interviews. Accurate and reliable information was clearly of central importance to participants’ ability to cope with surgery. However, there was a limit to what some participants wanted to know – they wanted to be well informed, but did not want to visualise this too vividly. This linked to choice and control as described above as participants recalled the importance of having information in order to make informed choices. When detailed information was not readily available, it was sought out and people took control of their own preparation by researching what it would be like to have an awake craniotomy. Jo implies that without this preparation she may have panicked: I knew all that before, I’d been prepared. So, she said, you obviously, when she touches part of your brain, you know you won’t be able to get any words out, but you know, don’t panic, it’s normal. So by being told what was normal and not normal I didn’t panic. (pp. 367–370)
Normal is an interesting word; it was used in five of the six interviews, either in relation to ‘returning to normal’ following surgery, clearly implying the lack of normality in and around surgery, or, as above, in respect to the surgery itself. It is particularly interesting in this context as there is something incongruous in thinking about normality in the context of having an awake craniotomy, in what is likely to be viewed as an abnormal situation by most people. Having sufficient information to prepare for the experience of surgery and the potential impact of surgery appeared to be extremely important. And closely related to this was the relationship with the team. Building a relationship with the team She got to know me and I feel […] we’ve got a relationship. (Jo: 306)
The way individuals related to the surgical team was of particular interest, as many of the professionals involved in awake craniotomy surgery will have spent much of their careers operating on people who are under general anaesthetic. A number of participants talked at length about their trust in the team, sometimes locating this more in one member of the team than others. Most often it was the surgeon whom people talked about in terms of trust; sometimes this seemed to be a blind trust, giving no reasoning as to why the surgeon was trusted; it was simply presented as a fact. Other people described a process of building a trusting relationship. All participants described that a trusting relationship with those responsible for the surgery (be it the surgeon or another pivotal member of the team) was important when deciding to have surgery. The successful building of this relationship appeared to enable participants to cope with the experience of surgery. The ability to concentrate on a person (often the neuropsychologist) rather than the procedure was particularly important. It helped with preparation for the experience of surgery, and the psychologist not only undertook language assessment but had a key role supporting emotional functioning. The bubble of dissociation So, it was as though … I think at one point I felt I was dreaming. (Chris: 46–47)
Coping with the experience of surgery was, unsurprisingly, a theme throughout the interviews. Different people coped in different ways and with differing degrees of success. A common thread was the sense of people feeling as if they were detached from their experiences in some way. Much thought was given to describing this experience; it seemed as if people were attempting to build and preserve a bubble around them during surgery to detach themselves from the experience of surgery itself. A word like dissociation carries with it many preconceived ideas. It is used in several very different psychological theories and much thought
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was given to the use of the word in this context. Despite the obvious drawbacks of using such an emotive word, it was not possible to capture the breadth of this theme through another word. Detachment is only one aspect of this; it also includes a sense of unreality, depersonalisation, compartmentalisation and incongruity It appeared that dissociation was a mechanism for coping with the fear described above, rather than engaging with the reality of the surgery itself and the associated fear of the loss of self. At times, this process appeared to begin to break down, and descriptions of the experience became vivid and visceral and hints of the underlying fear became more apparent. Posttraumatic stress disorder (PTSD) can only be diagnosed 6 months following a traumatic incident as prior to this time, symptoms may be part of normal emotional processing. However, given the association between dissociation and PTSD, this was a concern. It is important to highlight that none of the participants exhibited any other traumatic symptoms either during this study or during follow-ups by their neuropsychologist, and dissociation alone would not be sufficient to diagnose PTSD. Developing this ‘bubble of dissociation’ did not always happen easily. This appeared related to times when people became less fluent in their descriptions, glossing over aspects that were more difficult or becoming hesitant and uncertain. It seems to link to the process of construing a sense of normality despite the fundamentally abnormal situation; if one can reassure oneself that what is happening is normal, the bubble of dissociation can be preserved. Avoidance and a focus on the positive I’ve not really worried about it to be honest. (Chris: 17)
Avoidance and a focus on the positive were recurrent themes throughout the interviews and differed from other subthemes as it often appeared to be a deliberate and conscious choice, whereas other aspects of the bubble of dissociation did not appear to be so volitional.
Difficulty articulating experience. A further subtheme was the difficulty participants had in articulating their experiences. Some participants were able to identify this difficulty: I don’t … [long pause] … I struggle really … finding the … the feel … how to describe, how to describe these things. (Alex: 191–192)
Other examples include otherwise fluent and eloquent interviews becoming dysfluent and hesitant, as if struggling to find the words to describe the experience. Alternatively, sudden shifts in the topic of conversation were noticed, as if suddenly shifting to focussing on the positive again. Unemotional/clinical detachment You know, erm, better oncological outcome. (Jo: 33)
At times, participants utilised quite unemotional and clinical descriptions of their experiences. Sometimes participants rushed through their descriptions, particularly during the description of surgery itself and at times, the passage of time appeared distorted, with the surgical experience taking only a few minutes. Incongruous emotion it felt like […] someone was tugging at my brain [laugh]. (Alex: 378–379)
Although closely linked to focussing on the positive, which appeared to be a general strategy for coping with their broader experiences, incongruous emotions appeared to occur almost exclusively during descriptions of surgery itself. It seemed as if participants were laughing off the negative aspects of their experiences when they became too overwhelming, when the bubble of dissociation began to burst and when, even if only for a moment, they were no longer detached and separate from the reality of surgery but vividly and viscerally there: Because you’re feeling water trickling on your head and you’re thinking that’s open that (laughing)
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Howie et al. you know, my skulls open and it’s, you know, going on my brain, you know sort of thing, weird. (Jamie: 271–273)
In this extract, Jamie clearly has a very vivid image of what is happening in surgery and, for a moment, the bubble bursts. But quickly, she begins to describe experience in a more detached way. This theme is very closely linked to the vivid and visceral descriptions below, as much as it is connected to focussing on the positive, and demonstrates the interaction between and the inherent tension of preserving the bubble of dissociation while experiencing something fundamentally threatening. Vivid/visceral description Yeah, you know like … urrghh! [pause] just looking in somebody’s head, it … it … I’m not, don’t get me wrong, I, I, I’m not … you know, blood and gore and all that business, it’s not like, ewww … I’m not squeamish, you know, but yeah, the thought of … somebody tinkering around up there … (Jo: 117–120)
Jo was unable to describe exactly what disturbed her about this thought, she cannot explain how she feels, she is dysfluent and her description has a visceral sense – a whole body experience that is difficult to describe in words. Tinkering around is such a powerful use of words, the sense that somehow this process is clumsy and the outcome uncertain. Uncertainty of outcome in combination with the myriad of roles of the brain conjures a fundamentally threatening and difficult to articulate experience. For some participants, sensations such as temperature or sounds appeared to jar the detached narrative, for instance, a noise appeared to be associated with a somewhat nightmarish description of shadows on walls for one participant who quickly moves on to dismiss and minimise her negative experiences: When I was actually woken up ermm I can remember the noise of what … I don’t know what they were using ermm but I can remember the noise and it was … where it was it was right in my ear and it was very noise ermm and I could see the
shadow of [the surgeon] on the wall when she moved but there was no pain and there was nothing that I thought of … cause I was doing the pictures on the computer … and that seemed to take your mind off whatever was going on. So, there was no problems there at all. (Chris: 81–86)
The (unspoken) fear. Overarching all aspects of the analysis was this sense of a fear that was fundamentally difficult to articulate. Perhaps more than other functions, the loss of language is particularly scary: So this one was scary because I actually knew that everything, I was totally aware of everything that was going on around me. But (pause) I couldn’t speak. (Alex: 234–235)
Language is such a fundamental aspect of what makes us human. The fear of being left unable to communicate may be a fear of losing something of what it is that makes one human. Another participant articulated the fact that the brain controls so much, so how did one truly understand the risks? She felt prepared that she might lose her speech, but when she struggled to urinate following surgery, she worried this might be a form of brain damage. This is understandable; the brain is responsible for everything that makes us who we are and is so complex that it remains a mystery to most people. The experience of having an awake craniotomy evokes powerful responses. The sense of ‘tinkering’ with your brain, of playing around with the thing that makes you who you are, is fundamentally threatening. Furthermore, the threat is not easily describable; it is not as simple as the loss of a function, but potentially the loss of some aspect of who you are and who knows what aspect that might be. It could be in terms of language, or it could be the unknown impact surgery may have on other aspects of one’s personality or identity – the loss of self.
Summary The fundamental and overarching fear is very difficult to articulate and difficult to tolerate in surgery. In order to do this, participants
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created a bubble of dissociation to separate themselves from this inherent and unspeakable fear. Various things sustained this bubble. Avoidance appeared at times a deliberate strategy to prepare for or cope with some aspects of the experience, particularly before or after surgery. During surgery, dissociation from the experience did not appear to be something participants were doing intentionally. Dissociation appeared to be a more automatic defence, something to enable participants to detach from and cope with the experience of surgery itself. In order to sustain the bubble of dissociation, participants sometimes needed additional support, particularly when the vivid and visceral reality of the experience threatened to overwhelm; the relationship with the team, particularly the neuropsychologist, enabled participants to tolerate the surgery and reestablish the bubble of dissociation. Describing the threat was difficult; it appeared to provoke greater dysfluency than other aspects of the interview. This was particularly evident when describing the vivid and visceral aspects of the experience, which were sometimes avoided or glossed over but at other times laughed off with incongruent affect or described in an unemotional and cold way. The vivid or visceral descriptions perhaps gave the clearest insight into the unspoken threat, the evocative and powerful descriptions conjuring at times nightmarish images The extent to which the participants felt in control of their experiences also contributed to their ability to cope with fear. Building relationships and trusting staff both contributed to a sense of control but also helped to preserve a bubble of dissociation during surgery. Sensitive responses from staff enabled participants to cope with threatening experiences, not least with respect to relationships with the neuropsychologist who was not only involved in language assessment during surgery but was also able to monitor and bolster the emotional functioning of patients. Having appropriate information was also central in enabling participants to feel prepared for surgery and again helping to prepare for those aspects that would be most
threatening, further preserving the bubble of dissociation.
Discussion The purpose of patients undergoing awake craniotomy with language mapping is to be able to identify essential language areas in order to preserve function while ensuring the maximum degree of tumour resection. For this purpose, language assessment is usually completed by a neuropsychologist or a speech therapist with specialist training in the procedure. Previous research regarding awake craniotomy has primarily focussed on safety and clinical outcomes along with technical descriptions and refinements. This study focussed on patient’s lived experience of awake craniotomy and identified a number of previously overlooked aspects of this experience, most notably the emotional strain of undergoing such a participative and potentially threatening experience. This study highlights the less widely acknowledged but essential clinical role of supporting a patient’s emotional functioning during surgery, both for the wellbeing of the patient and to maximise patient participation in the functional language mapping assessment. Within this, the study highlights how the role of the neuropsychologist within theatre is multifaceted and requires complex and fine-tuned assessment of language functioning, anxiety and fatigue, to judge when participants require a break or to press on with the assessment and when emotional containment is needed. The combination of language assessment and specialist psychological assessment/intervention skills makes a neuropsychologist ideally placed to fulfil several roles in the perioperative care of patients undergoing awake craniotomy. The patients who had undergone this procedure highlighted how important it was for them to be prepared for the procedure, to know what to expect and to have a sense of control over the process without feeling responsible for the outcome. Maintaining a ‘bubble of dissociation’ was central in enabling participants to remain participative and alert during surgery while
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Howie et al. feeling in safe hands. Providing patients with a role in surgery serves to increase the sense of control and choice but also provided a less threatening focus for patients which helped to maintain the ‘bubble of dissociation’. Preserving this bubble creates an additional role for members of the surgical team, who will be more accustomed to working with surgical patients under general anaesthetic. New clinical roles include the following: •• The neurosurgeon, anaesthetist and neuropsychologist orientating the patient regarding all aspects of the awake surgery, including any difficult aspects and potential risks prior to the surgery; •• Having a trained and dedicated neuropsychologist/speech therapist to complete language mapping assessment during surgery; •• Preparation by the neuropsychologist prior to surgery provides a clear role for patients in surgery by being an active participant in language testing; •• Ensuring positive and open communication between the surgical team and the patient before, during and after surgery. This requires the clinical team to meet regularly to discuss, prepare and de-brief regarding awake craniotomy cases; •• Having someone in theatre dedicated to monitoring and supporting the emotional wellbeing of the patient. In this study this was undertaken by the neuropsychologist. One aspect of qualitative research, which can be seen as a major criticism, is the limited numbers of participants and generalisability of findings. However, by restricting sample sizes, each interview could be analysed in detail and individual experiences captured. IPA attempts to understand the experiences of individuals, and homogeneity of groups is important; it does not seek to broadly generalise. However, one of the strengths of this study was achieving both homogeneity and representativeness of the sample. By restricting recruitment to a single and rare procedure, and inviting all patients to
participate, this enabled a far more representative sample than is normally possible with small qualitative studies. While it is difficult to know how applicable this research is to similar procedures, for instance awake craniotomy with cortical mapping only, it is considered that clinical services offering similar awake procedures would also benefit from an evaluation of clinical roles to ensure that patients’ psychological wellbeing and maximum participation during surgery are achieved. Funding This research received no specific grant from any funding agency in the public, commercial or not-forprofit sectors.
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