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Research
Breaking the taboo: an interpretative phenomenological analysis of healthcare professionals’ experience of caring for palliative patients with disgusting symptoms Joshua Muggleton,1 Helen Guy,2 Ruth Howard3
1
School of Psychology, University of Birmingham, Birmingham, UK Birmingham and Solihull Mental Health NHS Foundation Trust, Heart of England NHS Foundation Trust, Birmingham, UK 3 School of Psychology, University of Birmingham, Birmingham, UK 2
Correspondence to Dr Ruth Howard, School of Psychology, University of Birmingham, Edgbaston, Birmingham, West Midlands B15 2TT, UK; [email protected] Received 10 April 2014 Revised 6 September 2014 Accepted 24 September 2014 Published Online First 8 October 2014
To cite: Muggleton J, Guy H, Howard R. BMJ Supportive & Palliative Care 2015;5: 189–195.
ABSTRACT Objectives Disgusting symptoms are common in healthcare settings. Previous research has identified that healthcare professionals systematically avoid contact with patients with disgusting symptoms, potentially compromising patient care. Furthermore, research has highlighted disgust in healthcare professionals as a possible contributory factor to dehumanisation and abuse of patients. Given that healthcare professionals often feel that disgust is unprofessional, they may also feel unable to express or process disgust in their work, potentially impacting their emotional health, and contributing to burning out. Given the ubiquity of disgust in palliative care, we investigated how palliative healthcare professionals' experience and cope with disgust in their work, and how they are supported in doing so. Methods and Results We interviewed six palliative healthcare professionals and analysed their transcripts using Interpretative Phenomenological Analysis, from which four themes are discussed. Conclusions Three key findings emerged. Firstly, participants were uncomfortable talking about disgust at work, reducing their access to support for disgust. Secondly, participants often neglected their own emotional needs, and as a result, sometimes become emotionally entangled with patients. Finally, participants were at risk of reducing vital socio-emotional support for patients with disgusting symptoms. Based on our analysis, we suggest interventions to counteract these effects.
INTRODUCTION Disgust is an intense, negative reaction to stimuli, which urges people to withdraw.1–3 Owing to the ubiquity of symptoms and
wounds in healthcare settings that may elicit disgust reactions,4 5 healthcare professionals need to be able to effectively deal with disgust on a regular basis. However, Kray6 and Lawton7 found that healthcare professionals systematically avoided contact with patients with symptoms they found to be disgusting. Worryingly, one study of abuse and neglect in nursing homes found that incidents of verbal aggression were often prompted by both urinary and faecal incontinence, and by feelings of disgust.7 More recently, Whitby and Gracias8 suggested that when not properly processed, disgust can lead to contempt, potentially contributing to the abuses seen in the Francis report.9 Disgust therefore has the potential to impact on the quality of patient care, potentially to the point of abuse. Disgust also has a direct effect on healthcare professionals; there is an expectation that those working in healthcare cannot show disgust, as doing so would seem unprofessional.10 However, while suppressing emotions such as disgust reduces the behavioural expressions of emotion, it also prolongs the feeling of emotion.11–13 Additionally, Gross and John14 found, compared to controls, those who suppressed emotions experienced more negative emotion and were ‘less satisfied with themselves and their relationships, more pessimistic about their future, and more prone to depression’ (ref. 14, p.360). Finally, because suppression is an active process, it uses cognitive resources, potentially reducing performance in other tasks,15 increasing the risk of medical mistakes.
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Research Among healthcare professionals, those working in palliative care are particularly likely to experience distressing, unsightly or foul smelling symptoms.16 This may provide them with a greater breadth and depth of experience from which to draw on when being asked about disgust in healthcare settings. Therefore, this study aimed to understand the experience of disgust in palliative healthcare professionals, how they could be best supported in working with disgusting symptoms, and the strategies and psychological processes employed when dealing with disgust. In order to understand the perspective and experiences of palliative healthcare professionals in relation to experiences of disgust, interpretative phenomenological analysis (IPA17) was used. IPA is a qualitative approach that combines phenomenology (the study of subjective experience), hermeneutics (the use of interpretation to gain understanding) and idiography (the focus on the particular) to understand in detail the ‘lived experience’ of individuals.18 Unlike other strategies, IPA aims to do this ‘in a way which, as far as possible, enables that experience to be expressed in (the participant’s) terms, rather than according to predefined category systems’ (ref. 18, p.32). IPA has been increasingly used in studies addressing resilience and challenges in healthcare professionals,19 20 and was therefore seen as a suitable methodology.
METHOD Each participant attended a 1 h, semistructured, audio recorded interview, conducted solely by JM in a private room at their workplace. Interviews focused on five areas: ▸ Participants’ past experiences with disgusting symptoms ▸ Participants’ thoughts and feelings around disgust ▸ How participants approach a patient with disgusting symptoms ▸ What support participants use when dealing with disgust ▸ The institutional understanding of disgust.
A volunteer sample of six participants (all female) with at least 3 years experience in palliative care were recruited from a specialist palliative care centre via an open e-mail. The sample size was deemed appropriate, based on Smith et al.18 No participants dropped out. Additional information about participants can be found on table 1. This project was approved by a West Midlands NHS Research and Development Service. Transcripts were coded and analysed by JM, based on the procedure set out by Smith et al,18 using triangulation between all three authors to ensure validity. This generated 15 subthemes that described the themes present across all interviews, and used individual differences and similarities to create a rich, detailed description of how participants experienced disgust in palliative care. Participants did not provide feedback on transcripts or analysis. 190
ANALYSIS All of the 15 subthemes generated (see table 2) were analysed in depth. From these, four of particular relevance are discussed here. The importance of being an empathic professional
For participants, wanting to be a ‘caring’ (Deborah) professional is vital to them, and a key motivator. For example, early in her interview, Deborah defined her perception of her role in terms of caring: We’re doing nursing because we’re caring, you know? We care; we want to do the best for our patients. [Deborah]
The participants are doing the job because they care; both personally and professionally, they want to do the best for their patients, and not just in terms of the medical care they deliver. This manifested in two ways. First participants wanted to gain a fuller understanding of their patients’ problems and concerns though conducting a holistic assessment, as they believed this would facilitate the delivery of best possible care. Doing so involved being an empathic professional; they put themselves in their patient’s shoes, considered what their life is like, and used their professional expertise to overcome the issues they faced. Participants felt that failure to conduct a holistic assessment meant they were ‘failing’ (Deborah) the patient. Second, being an empathic professional means providing socioemotional support. In this extract, Alex talked about her role, beyond that of a doctor, in her clients’ journeys. ‘“… there is something about being calm with whatever is given to you as a [healthcare professional]
Table 1 Participant information Pseudonym
Palliative care experience
‘Alex’
16 years
‘Briony’
15 years
‘Caroline’
13 years
‘Deborah’
4.5 years
‘Elizabeth’
8 years
‘Fiona’
21 years
Description Doctor (consultant) working within hospitals and the specialist palliative care clinic Lead occupational therapist working in the community, and the specialist palliative care clinic Lead nurse for an specialist palliative care clinic-based service, specialising in mild to moderate care needs Nurse specialist for an specialist palliative care clinic and home-based service, delivering specialised treatments Lead nurse for an specialist palliative care clinic and home-based service delivering specialised treatments Senior nurse for an specialist palliative care clinic-based service, specialising in mild to moderate care needs
Muggleton J, et al. BMJ Supportive & Palliative Care 2015;5:189–195. doi:10.1136/bmjspcare-2014-000698
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Research Table 2 Thematic structure and descriptions of subthemes Theme
Subtheme
Description
Professional views on disgust
Disgust is unprofessional
Showing disgust or allowing it to affect one’s work was felt to be highly unprofessional. To combat this, participants minimised the importance of their own feelings, believing that they just have to ‘get on and do it’ Disgust hindered participants’ ability to work empathically in two ways. First by ‘clouding’ participants’ ability to be empathic and gain a holistic understanding of their patients needs. Second by driving participants to leave early, reducing socioemotional support Participants appeared to hold a dual perspective, being acutely aware of both their own feelings of disgust, and the participant’s feelings of sadness. However, participants assumed the feelings of their patients, without any apparent clarification The feeling of disgust was affected by mediators (disgust triggers) and moderators (factors affecting the degree of disgust felt). Mediators were most commonly sputum, followed by disfigurement. Moderators included having to approach/touch something disgusting, elaboration of disgust (ie, thinking about it) and desensitisation to disgust It was personally and professionally important for participants to be empathic. This helped them deliver best patient care, both in gaining a holistic understanding of their patients’ needs, and in providing socioemotional support Participants focus as professionals was always on the patient. However, this, coupled with their empathic connection, meant that participants often neglected their own emotional needs, arguing that they were unimportant, compared to the patient. They also started to imagine themselves in the same situation as their patients, leading them to experience distress Participants felt that because disgust cannot be expressed, they have to suppress their emotions with clients, and cannot discuss their disgust at work. This resulted in participants having to ‘hold it together’ both during and after their time with the patient Participants believed that disgust was taboo in palliative care. While people acknowledge it by avoiding the topic, they have to use words such as ‘difficult’ and ‘challenging’. Participants’ feared that by breaking the taboo, they would risk being judged for being unprofessional Participants understood palliative care is a tough area to work in, both professionally and emotionally. However, this difficulty also led to a sense of camaraderie among staff The focus was very much on the patient’s problems, or on problems delivering the intervention, very little time was given to thinking about how the professional feels, and their personal difficulties. As a result, participants appeared to project their feelings onto their patients, either to get support, or without realising. Despite this, there was some implicit acknowledgement and support for disgust Participants could do little to prepare for disgust, other than composing their face so as to avoid showing disgust to their patient Distraction was participants’ main way of coping with disgust. This involved disengaging their attention from disgust, and then refocusing focusing on the job in hand. Alternatives included using mild pain to distract from disgust, or seeing patients as an object, rather than a person. Informal ‘checking in’ support was by far the most common way of accessing support. This is a quick informal debrief with any palliative care professional. Although this stays within the confines of ‘difficult’ or ‘challenging’, there seems to be some implicit acknowledgement of the professionals’ feelings, and support for that. Participants were aware of a system whereby staff could pass patients onto a colleague long term, if they had real difficulty with that case. However, while participants were happy to receive patients from colleagues, they were still very nervous about passing on patients long term Participants often felt it was important to keep home and work separate, although this was not always perfectly carried out. While participants’ families were aware of their difficulties, they were not in a position to be able to offer effective support
Disgust damages relationships with patients
The personal experience of disgust
Feeling sadness alongside disgust Disgust mediators and moderators
An empathic connection makes them vulnerable
The importance of being an empathic professional Emotional entanglement
Holding it together
Working in palliative care
Disgust is taboo
How tough palliative care is Talking about difficulties, not disgust
Coping with disgust
Preparing Distraction
‘Checking in’
Passing on patients
Keeping home and work life separate
that can be very helpful in palliative care, so then, whatever horrors [ patients] go through, you’re not losing it.[…] You’re different from the person in the street who won’t look at them, or that charity workers who go there, you’re able to hold it.[…] They all disintegrate, because, you know, telling someone they’re going to die,[…]. So you’re sort of sitting there in the middle of this, sort of holding it. [Alex]
Here Alex described how she needed to be a source of calm and emotional support for patients. She drew on this skill when patients were emotionally ‘disintegrating’ on learning of their prognosis, and long-term, when she supports them through whatever ‘horrors’ they might face. While doing so causes her distress, she feels she has to hold this in, in order to remain calm and support her patients.
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Research Disgust damages relationships with patients
Disgust in relation to patients’ symptoms interfered with participants’ ability to be empathic professionals, and gain a holistic understanding of a patient’s needs. While participants tried to understand ‘what the person is really saying’ disgusting symptoms made it harder for participants to really listen to patients. In this case, Alex illustrated the difficulties she faced with disgust when conducting consultations. With any [consultation], you should be looking in a bit, and thinking ‘what is actually going on here’,[…] And I think the problem with, when there is a physical symptom that you find revolting, you end up with your own revulsion…overwhelming that view, so then you’re having to work even harder[…] to hear what the person is really saying to you, because you, you’re trying to deal with all the other stuff as well. [Alex]
Here, Alex described how she cannot ‘hear’ the patient in the same way she usually does during her consultation, and must therefore ‘work even harder to hear what the person is really saying’ to compensate. In addition to impairing participants’ ability to empathise with their patients, disgust also reduces participants’ desire to spend extra time with their patients. In this example, Fiona explained how she felt disgust affected the way she conducted assessments. … once you’ve done the assessment with them, it might reduce any social interaction you might have with that patient.[…] it’s a stepped approach. The first step has got to be about the symptom management. The second step in conversation is almost a social type bit, and although that’s very important, because these people have enough stigma that they get landed with […] once I’ve done the symptom management, the bit that I’m really there to do, anything else that I can give thereafter is a bonus. So if the bonus on that day is only a small bonus, then that’s the way it’s got to be. [Fiona]
Here, while providing socioemotional support was ‘very important’ to Fiona, she recognised that disgust ‘might reduce the time that you want to spend with the patient’. Consequently, sometimes participants desire to stay longer to provide emotional support was not sufficient to overcome their feelings of disgust, leading them to withdraw from the patient early, somewhat contrary to the conception of working in palliative care outlined in the importance of being an empathetic professional. Feeling sadness alongside disgust
In addition to our predefined characteristics of disgust, participants also reported an additional aspect to disgust: sadness. Caroline presented a particularly moving example of both extreme disgust and sadness, an sample of which is presented here: [I] was just trying to focus on the fact that he was, he was here with us and he needed our help. But try
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taking your, taking your eyes off this dreadful wound he’d got, it was awful.[…] I felt, erm, upset, really upset for him. [Caroline]
Describing the incident, Caroline assumes two different positions. First, she described her own position as a healthcare professional—her difficulty taking her eyes of the symptom, and her desire to help her patient. However, she also assumes the patient’s perspective; she tried to focus on the patient, that he needed her help, and crucially his symptoms made her feel ‘upset for him’. These two perspectives lead to two separate emotions. As a professional, the symptom is evaluated egocentrically, as something disgusting for her to look at and work with and is the root of her feeling of disgust. However, when assuming the patient’s perspective, the symptoms have a profound impact on her patient’s life, both medically and socially, for which she feels upset. Caroline’s descriptions of the wound as ‘dreadful’ and ‘awful’ can therefore be read very differently depending on which perspective is taken; as a professional, they imply disgust, but as a patient, they imply sadness. Participants did not report asking how patients felt about their symptoms. Instead they assume unquestioningly that their patients must feel ‘sad’ [Briony] about their symptoms, and adopt that sadness themselves. Therefore, participants may project their own feelings of sadness onto the patient. Alternatively, participants may be very sensitive to their patients’ sadness, and reflect that in their interviews. However, it is notable that participants did not explore what their patients felt in relation to their symptoms. Talking about difficulties, not disgust
Staff discussed interventions by focusing explicitly on the patient, and how the patient felt about the symptom. In the following extracts, Briony talked about her role as a team leader, and how they approached and talked about disgusting symptoms within the team. If we talk about it as a team, I think we talk about [interventions] not in the fact we found whatever is going on disgusting, but more how sad and how hard it must be [for the patient] to cope with[…] So we talk about it in terms of empathising with our patients. We don’t talk about it in terms of ‘oh my god, did you see that, that’s awful isn’t it?’[…] there’s a real distinction in there, and we’re very clear about that. [Briony]
In Briony’s example, the phrase ‘did you see that, that’s awful isn’t it?’ is focused on the professional’s own experience, not that of the patient. The ‘real distinction’ alluded to is between the empathic and egocentric ways of talking about disgust, a conclusion supported by the importance participants placed on being an empathic professional. By taking a patientcentered view and not being allowed to talk about their own feelings, staff may be more liable to project
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Research their own feelings onto their patients. This view is supported by her later comments: I know someone’s come to me and said ‘oh I know you’ve seen so and so’ or you know ‘oh that’s hard isn’t it’, and I say ‘yeah it is hard, I don’t know how she copes with it’, and they might say, you know ‘oh its difficult’, and I’ll say ‘oh I know’. [Briony]
When a colleague talked about how hard it was for them to see their last patient, Briony immediately reframed the conversation in terms of the patient by saying ‘I don’t know how she copes with it’. Her colleague’s response of ‘oh it’s difficult’ now implied it is difficult for the patient, rather than for themselves. This was an acceptable response for Briony, who then agreed with her colleague. However, while this was now in a format Briony felt was acceptable, her colleague has been encouraged to not talk about how difficult the situation is for her, but how difficult it is for the patient. While some projection of feelings appears to be going on, it is unclear whether staff were aware of this and talking about their own difficulties as the patient’s in order to get support. I might say ‘I found myself pinching my hand’ or something, so you might share strategies in that respect with one and other,[…], so I think you share strategies, and you discuss how hard it is for the patient. [Briony]
Interestingly, participants did not use the word ‘disgust’, instead they used terms referring to a difficulty, such as ‘hard’. Despite talking about how hard something was for a patient, Briony is able to recognise her that her colleague struggled with disgust. This allows her to share her strategies for dealing with disgust providing practical, rather than emotional support. DISCUSSION The combined analysis of all 15 subthemes produced several discussion points, each supported by at least three different subthemes, the three most relevant of which are discussed here. First, while participants experienced feelings of disgust in the course of their work, they saw it as unprofessional to acknowledge those feelings. Second, participants were highly focused on their patients’ medical, social and emotional needs, but may have neglected their own needs. Third, the feeling of disgust in participants did not appear to impact on the medical care offered to patients, but participants reported that it did reduce the socio-emotional support they were able to offer to patients. Disgust is unprofessional within palliative care
As predicted by Holmes et al,10 participants saw disgust as unprofessional. This had two effects. First, participants suppressed their feelings of disgust,
fearing their patient may recognise their feelings as disgust. Second, although participants felt they worked in a supportive team, they were afraid to express their feelings of disgust for fear of being judged by their colleagues. Participants avoided showing disgust around patients by suppressing their emotions. In addition to the health risks21 suppression uses cognitive resources,15 potentially increasing the risk of medical mistakes. Further, Gross and John14 suggested that those using emotional suppression were ‘less satisfied with themselves and their relationships, more pessimistic about their future, and more prone to depression’ ( p.360). While these issues were beyond the scope of the current interviews, emotional suppression could lead participants to a ‘troubled sense of wellbeing’ ( p.360). The belief that disgust was unprofessional caused it to become taboo within the workplace. Therefore, participants felt restricted to talking about their patients’ difficulties, or about delivering treatment to the patient, rather than their own difficulties with disgust. As a result, staff support often dealt with disgust implicitly, without directly acknowledging the thoughts and feelings participants experienced, and without using the term directly. While talking about disgust may not reduce the emotional impact of an experience, if participants were to talk about their feelings of disgust, they may feel better about these experiences, be able to better process these experiences, and see objective improvements in their physical health.22 23 Clinical supervision can address the psychological dimensions of palliative patient care, and is recommended,24 and beneficial.25 Participants focused on patients medical, social and emotional needs, neglecting their own
Disgusting symptoms would often trigger emotions secondary to disgust, such as sadness, which would require processing. However, although participants were highly focused on the medical, social and emotional needs of their patients, they tended to minimise or neglect their own emotional needs. Compounding this, participants felt they were unable to talk about their emotions, particularly disgust. Perhaps because healthcare professionals did not talk about their experiences of disgust, they may have found it hard to talk to their patients about it, and enquire about their lived experiences. In lieu of this, participants may have tried to gain an understanding of their patients experience through projective and empathic processes. While projecting their emotions onto patients may provide participants with a professionally acceptable outlet for their emotions, it also carries psychological costs. Participants’ emotional well-being may become linked to the emotional or physical well-being of their patients. They may feel that in healing their patient, they are healing themselves. Supporting this, several
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Research staff members went beyond what would normally be expected of them in order to ensure that they treated the patient. Equally, participants sometimes personalised their patients, linking their own emotional well-being to their patient’s health. Therefore, it is important that palliative healthcare professionals are given an outlet for their emotions to avoid projecting their feelings onto their patients, particularly given the often-deteriorating condition of patients in palliative care. Despite this, National Institute for Health and Care Excellence (NICE)26 only specifies that healthcare professionals in palliative care require support in dealing with loss, grief and bereavement, not for feelings of disgust or the ongoing suffering of their patients.
group discussion of past experiences of disgust at work may help participants recognise the ubiquity of disgust, and break the taboo. Third, by providing training on how to approach disgust with their team, managers may feel more confident in their ability to provide support for disgust, both in clinical supervision, and ‘checking in’ support. Finally, managers and clinical supervisors may benefit from additional training on emotions elicited alongside disgust, helping them to identify and support these emotions in their staff. By providing an outlet for these emotions, staff may be less likely to project their feelings onto their patients. Implications of findings
Disgust reduced patients’ socioemotional support
Disgust limited participants’ socioemotional support for their patients, likely reducing how supported patients felt. However, healthcare professionals are an important source of emotional support for patients.27 28 Equally, healthcare professionals are likely to be one of the few people patients would feel able to talk to about their diagnosis. Additionally, Slevin et al28 reported that patients who felt dissatisfaction with the support they received scored significantly higher on the Hospital Anxiety and Depression Scale (HADS29;). Finally, it was important to participants (and NICE quality standards26;) that they provide a holistic assessment of the patients’ needs, including their socioemotional well-being. It therefore seems likely that disgust, and the resulting reduction in socioemotional support, will have a direct impact on patients’ emotional well-being.
The analysis detailed the experience of six palliative healthcare professionals working with disgust. However, by taking an idiographic, rather than nomothetic approach, these results are not directly generalisable to other palliative or non-palliative healthcare professionals. Despite this, where these findings resonate with healthcare professionals, they do provide a framework by which to understand the likely experiences of those working with disgusting symptoms and suggestions for developing support structures. The results highlight the possible implications of disgusting symptoms on patients’ and professionals’ psychological well-being. It is therefore vital that frontline healthcare services, working with patients with potentially disgusting symptoms, consider whether their staff members are adequately supported to cope with, express, and understand disgust. Conclusion
Recommendations
While participants may need to suppress their emotions around patients in order to remain professional, the effects of this may be exacerbated by their inability to discuss disgust at work, requiring participants to ‘hold it together’. By breaking the taboo around disgust, participants may be able to access support, minimising the effects of suppressing and ‘holding together’ their emotions. The only time participants reported this had happened was when the taboo was broken by someone with perceived authority, such as a manager, who felt less fear of being judged for doing so. Therefore, a top-down approach, focusing on training and encouraging managers to break the taboo and provide support for disgust may be particularly effective. Training for managers and clinical supervisors on disgust is likely to require four elements. First, although participants reported feeling disgust, they often did not recognise it as disgust before taking part in the study. Therefore, providing psychoeducation on the nature of disgust, and its relationship to sadness may help managers identify disgust in themselves and others, and know when to provide support. Second, 194
Healthcare professionals experiencing disgust in the course of their work may be at risk of compromising both their emotional health and patient care. This is particularly true in environments where disgust is thought to be unprofessional, leading staff to suppress, deny and possibly project their feelings. These effects have not been previously identified or researched in healthcare professionals. While further nomothetic research is required to define the extent of these effects across settings, healthcare providers should consider what support their staff receive, and whether their work culture allows them to utilise that support for disgust. Contributors JM conducted research on the relevant background literature, finished the ethics and sponsorship application, arranged and conducted all interviews. He also transcribed, coded and analysed all interviews, and wrote the manuscript. HG came up with the original idea for the study, provided background research, started the ethics application, liaised with the NHS trust and staff to facilitate the study, sent the email inviting staff to take part, provided feedback and triangulation for the analysis, provided feedback and edits on the manuscript, and provided clinical supervision to JM. RH researched the ethical requirements and process for the study, took responsibility as chief investigator for the study, provided feedback and triangulation for the analysis, provided feedback
Muggleton J, et al. BMJ Supportive & Palliative Care 2015;5:189–195. doi:10.1136/bmjspcare-2014-000698
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Research and edits on the manuscript, provided academic supervision to JM, and is guarantor of this study. Competing interests None. Ethics approval Walsall Healthcare NHS Trust. Provenance and peer review Not commissioned; externally peer reviewed. Data sharing statement No additional data are available.
REFERENCES 1 Darwin C. The expression of the emotions in man and animals. London: Murray, 1898:254–77. 2 Barrett LF, Wager TD. The structure of emotion. Evidence from neuroimaging studies. Curr Dir Psychol Sci 2006;15:79–83. 3 Rozin P, Haidt J, McCauley CR. Disgust. In: Lewis M, Haviland J, eds. Handbook of emotions. 2nd edn. New York: Guilford, 2000:637–53. 4 Van Dongen E. It isn’t something to yodel about, but it exists! Faeces, nurses, social relationships and status within a mental hospital. Aging Ment Health 2001;5:205–15. 5 Goergen T. A multi-method study on elder abuse and neglect in nursing homes. J Adult Prot 2004;6:15–25. 6 Krey H. The problem of controlling one’s emotions in nursing education. An examination of how to deal with the feelings of disgust among 3rd year nursing students. Forum Qual Soc Res 2004;5. http://www.qualitative-research.net/index.php/fqs/ article/view/654 Mar 2014. 7 Lawton J. Contemporary hospice care: the sequestration of the unbounded body and “dirty dying.” Sociol Health Ill 1998;20:121–43. 8 Whitby P, Gracias S. Reflecting on the Francis report: this has happened before. Clin Psychol Forum 2013;249:13–7. 9 Francis R. Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry. London: The Stationery Office, 2013. 10 Holmes D, Perron A, O’Byrne P. Understanding disgust in nursing: abjection, self, and the other. Res Theory Nurs Pract 2006;20:305–15. 11 Gross JJ. Emotion regulation: affective, cognitive, and social consequences. Psychophysiology 2002;39:281–91. 12 Richards J, Gross J. Composure at any cost? The cognitive consequences of emotion suppression. Pers Soc Psychol Bull 1999;25:1033–44. 13 Ólafsson RP, Emmelkamp PMG, Gunnarsdóttir ER, et al. Suppressing disgust related thoughts and performance on a subsequent behavioural avoidance task: implications for OCD. Behav Res Ther 2013;51:152–60.
14 Gross JJ, John OP. Individual differences in two emotion regulation processes: implications for affect, relationships, and well-being. J Pers Soc Psychol 2003;85:348–62. 15 Gross J, Levenson R. Hiding feelings: the acute effects of inhibiting negative and positive emotion. J Abnorm Psychol 1997;106:95–103. 16 MacLeod S. The psychiatry of palliative medicine: the dying mind. 2nd edn. London: Radcliffe, 2011. 17 Smith JA. Beyond the divide between cognition and discourse: using interpretative phenomenological analysis in health psychology. Psychol Health 1996;11:261–71. 18 Smith JA, Flowers P, Larkin M. Interpretative phenomenological analysis: theory, method and research. London: Sage, 2009. 19 Ablett J, Jones R. Resilience and well-being in palliative care staff: a qualitative study of hospice nurses’ experience of work. Psychooncol 2007;16:733–40. 20 Noble S, Marie A, Finlay I. Challenges faced by palliative care physicians when caring for doctors with advanced cancer. Palliative Med 2008;22:71–6. 21 Demaree HA, Schmeichel BJ, Robinson JL, et al. Up- and down-regulating facial disgust: affective, vagal, sympathetic, and respiratory consequences. Biol Psychol 2006;71:90–9. 22 Pennebaker J, Zech E, Rimé B. Disclosing and sharing emotion: psychological, social, and health consequences. In: Stroebe MS, Stroebe W, Hansson RO, et al., eds. Handbook of bereavement research: consequences, coping, and care. Washington, DC: APA, 2001:517–39. 23 Finkenauer C, Rimé B. Keeping emotional memories secret: health and subjective well-being when emotions are not shared. J Health Psychol 1998;3:47–58. 24 Ramirez A, Addington-Hall J, Richards M. The carers families and friends as carers. BMJ 1998;316:208–11. 25 Jones A. Some experiences of professional practice and beneficial changes derived from clinical supervision by community Macmillan nurses. Eur J Cancer Care 2000;10:21–30. 26 National Institute for Health and Care Excellence. QS13: Quality Standard for end of life care for adults. 2011. http:// www.nice.org.uk/guidance/QS13 Mar 2014. 27 Dunkel-Schetter C. Social support and cancer: findings based on patient interviews and their implications. J Soc Issues 1984;40:77–98. 28 Slevin ML, Nichols SE, Downer SM, et al. Emotional support for cancer patients: patients: what do patients really want? Brit J Cancer 1996;74:1275–9. 29 Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiat Scand 1983;67:361–70.
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Breaking the taboo: an interpretative phenomenological analysis of healthcare professionals' experience of caring for palliative patients with disgusting symptoms Joshua Muggleton, Helen Guy and Ruth Howard BMJ Support Palliat Care 2015 5: 189-195 originally published online October 8, 2014
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Research
Breaking the taboo: an interpretative phenomenological analysis of healthcare professionals’ experience of caring for palliative patients with disgusting symptoms Joshua Muggleton,1 Helen Guy,2 Ruth Howard3
1
School of Psychology, University of Birmingham, Birmingham, UK Birmingham and Solihull Mental Health NHS Foundation Trust, Heart of England NHS Foundation Trust, Birmingham, UK 3 School of Psychology, University of Birmingham, Birmingham, UK 2
Correspondence to Dr Ruth Howard, School of Psychology, University of Birmingham, Edgbaston, Birmingham, West Midlands B15 2TT, UK; [email protected] Received 10 April 2014 Revised 6 September 2014 Accepted 24 September 2014 Published Online First 8 October 2014
To cite: Muggleton J, Guy H, Howard R. BMJ Supportive & Palliative Care 2015;5: 189–195.
ABSTRACT Objectives Disgusting symptoms are common in healthcare settings. Previous research has identified that healthcare professionals systematically avoid contact with patients with disgusting symptoms, potentially compromising patient care. Furthermore, research has highlighted disgust in healthcare professionals as a possible contributory factor to dehumanisation and abuse of patients. Given that healthcare professionals often feel that disgust is unprofessional, they may also feel unable to express or process disgust in their work, potentially impacting their emotional health, and contributing to burning out. Given the ubiquity of disgust in palliative care, we investigated how palliative healthcare professionals' experience and cope with disgust in their work, and how they are supported in doing so. Methods and Results We interviewed six palliative healthcare professionals and analysed their transcripts using Interpretative Phenomenological Analysis, from which four themes are discussed. Conclusions Three key findings emerged. Firstly, participants were uncomfortable talking about disgust at work, reducing their access to support for disgust. Secondly, participants often neglected their own emotional needs, and as a result, sometimes become emotionally entangled with patients. Finally, participants were at risk of reducing vital socio-emotional support for patients with disgusting symptoms. Based on our analysis, we suggest interventions to counteract these effects.
INTRODUCTION Disgust is an intense, negative reaction to stimuli, which urges people to withdraw.1–3 Owing to the ubiquity of symptoms and
wounds in healthcare settings that may elicit disgust reactions,4 5 healthcare professionals need to be able to effectively deal with disgust on a regular basis. However, Kray6 and Lawton7 found that healthcare professionals systematically avoided contact with patients with symptoms they found to be disgusting. Worryingly, one study of abuse and neglect in nursing homes found that incidents of verbal aggression were often prompted by both urinary and faecal incontinence, and by feelings of disgust.7 More recently, Whitby and Gracias8 suggested that when not properly processed, disgust can lead to contempt, potentially contributing to the abuses seen in the Francis report.9 Disgust therefore has the potential to impact on the quality of patient care, potentially to the point of abuse. Disgust also has a direct effect on healthcare professionals; there is an expectation that those working in healthcare cannot show disgust, as doing so would seem unprofessional.10 However, while suppressing emotions such as disgust reduces the behavioural expressions of emotion, it also prolongs the feeling of emotion.11–13 Additionally, Gross and John14 found, compared to controls, those who suppressed emotions experienced more negative emotion and were ‘less satisfied with themselves and their relationships, more pessimistic about their future, and more prone to depression’ (ref. 14, p.360). Finally, because suppression is an active process, it uses cognitive resources, potentially reducing performance in other tasks,15 increasing the risk of medical mistakes.
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Research Among healthcare professionals, those working in palliative care are particularly likely to experience distressing, unsightly or foul smelling symptoms.16 This may provide them with a greater breadth and depth of experience from which to draw on when being asked about disgust in healthcare settings. Therefore, this study aimed to understand the experience of disgust in palliative healthcare professionals, how they could be best supported in working with disgusting symptoms, and the strategies and psychological processes employed when dealing with disgust. In order to understand the perspective and experiences of palliative healthcare professionals in relation to experiences of disgust, interpretative phenomenological analysis (IPA17) was used. IPA is a qualitative approach that combines phenomenology (the study of subjective experience), hermeneutics (the use of interpretation to gain understanding) and idiography (the focus on the particular) to understand in detail the ‘lived experience’ of individuals.18 Unlike other strategies, IPA aims to do this ‘in a way which, as far as possible, enables that experience to be expressed in (the participant’s) terms, rather than according to predefined category systems’ (ref. 18, p.32). IPA has been increasingly used in studies addressing resilience and challenges in healthcare professionals,19 20 and was therefore seen as a suitable methodology.
METHOD Each participant attended a 1 h, semistructured, audio recorded interview, conducted solely by JM in a private room at their workplace. Interviews focused on five areas: ▸ Participants’ past experiences with disgusting symptoms ▸ Participants’ thoughts and feelings around disgust ▸ How participants approach a patient with disgusting symptoms ▸ What support participants use when dealing with disgust ▸ The institutional understanding of disgust.
A volunteer sample of six participants (all female) with at least 3 years experience in palliative care were recruited from a specialist palliative care centre via an open e-mail. The sample size was deemed appropriate, based on Smith et al.18 No participants dropped out. Additional information about participants can be found on table 1. This project was approved by a West Midlands NHS Research and Development Service. Transcripts were coded and analysed by JM, based on the procedure set out by Smith et al,18 using triangulation between all three authors to ensure validity. This generated 15 subthemes that described the themes present across all interviews, and used individual differences and similarities to create a rich, detailed description of how participants experienced disgust in palliative care. Participants did not provide feedback on transcripts or analysis. 190
ANALYSIS All of the 15 subthemes generated (see table 2) were analysed in depth. From these, four of particular relevance are discussed here. The importance of being an empathic professional
For participants, wanting to be a ‘caring’ (Deborah) professional is vital to them, and a key motivator. For example, early in her interview, Deborah defined her perception of her role in terms of caring: We’re doing nursing because we’re caring, you know? We care; we want to do the best for our patients. [Deborah]
The participants are doing the job because they care; both personally and professionally, they want to do the best for their patients, and not just in terms of the medical care they deliver. This manifested in two ways. First participants wanted to gain a fuller understanding of their patients’ problems and concerns though conducting a holistic assessment, as they believed this would facilitate the delivery of best possible care. Doing so involved being an empathic professional; they put themselves in their patient’s shoes, considered what their life is like, and used their professional expertise to overcome the issues they faced. Participants felt that failure to conduct a holistic assessment meant they were ‘failing’ (Deborah) the patient. Second, being an empathic professional means providing socioemotional support. In this extract, Alex talked about her role, beyond that of a doctor, in her clients’ journeys. ‘“… there is something about being calm with whatever is given to you as a [healthcare professional]
Table 1 Participant information Pseudonym
Palliative care experience
‘Alex’
16 years
‘Briony’
15 years
‘Caroline’
13 years
‘Deborah’
4.5 years
‘Elizabeth’
8 years
‘Fiona’
21 years
Description Doctor (consultant) working within hospitals and the specialist palliative care clinic Lead occupational therapist working in the community, and the specialist palliative care clinic Lead nurse for an specialist palliative care clinic-based service, specialising in mild to moderate care needs Nurse specialist for an specialist palliative care clinic and home-based service, delivering specialised treatments Lead nurse for an specialist palliative care clinic and home-based service delivering specialised treatments Senior nurse for an specialist palliative care clinic-based service, specialising in mild to moderate care needs
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Research Table 2 Thematic structure and descriptions of subthemes Theme
Subtheme
Description
Professional views on disgust
Disgust is unprofessional
Showing disgust or allowing it to affect one’s work was felt to be highly unprofessional. To combat this, participants minimised the importance of their own feelings, believing that they just have to ‘get on and do it’ Disgust hindered participants’ ability to work empathically in two ways. First by ‘clouding’ participants’ ability to be empathic and gain a holistic understanding of their patients needs. Second by driving participants to leave early, reducing socioemotional support Participants appeared to hold a dual perspective, being acutely aware of both their own feelings of disgust, and the participant’s feelings of sadness. However, participants assumed the feelings of their patients, without any apparent clarification The feeling of disgust was affected by mediators (disgust triggers) and moderators (factors affecting the degree of disgust felt). Mediators were most commonly sputum, followed by disfigurement. Moderators included having to approach/touch something disgusting, elaboration of disgust (ie, thinking about it) and desensitisation to disgust It was personally and professionally important for participants to be empathic. This helped them deliver best patient care, both in gaining a holistic understanding of their patients’ needs, and in providing socioemotional support Participants focus as professionals was always on the patient. However, this, coupled with their empathic connection, meant that participants often neglected their own emotional needs, arguing that they were unimportant, compared to the patient. They also started to imagine themselves in the same situation as their patients, leading them to experience distress Participants felt that because disgust cannot be expressed, they have to suppress their emotions with clients, and cannot discuss their disgust at work. This resulted in participants having to ‘hold it together’ both during and after their time with the patient Participants believed that disgust was taboo in palliative care. While people acknowledge it by avoiding the topic, they have to use words such as ‘difficult’ and ‘challenging’. Participants’ feared that by breaking the taboo, they would risk being judged for being unprofessional Participants understood palliative care is a tough area to work in, both professionally and emotionally. However, this difficulty also led to a sense of camaraderie among staff The focus was very much on the patient’s problems, or on problems delivering the intervention, very little time was given to thinking about how the professional feels, and their personal difficulties. As a result, participants appeared to project their feelings onto their patients, either to get support, or without realising. Despite this, there was some implicit acknowledgement and support for disgust Participants could do little to prepare for disgust, other than composing their face so as to avoid showing disgust to their patient Distraction was participants’ main way of coping with disgust. This involved disengaging their attention from disgust, and then refocusing focusing on the job in hand. Alternatives included using mild pain to distract from disgust, or seeing patients as an object, rather than a person. Informal ‘checking in’ support was by far the most common way of accessing support. This is a quick informal debrief with any palliative care professional. Although this stays within the confines of ‘difficult’ or ‘challenging’, there seems to be some implicit acknowledgement of the professionals’ feelings, and support for that. Participants were aware of a system whereby staff could pass patients onto a colleague long term, if they had real difficulty with that case. However, while participants were happy to receive patients from colleagues, they were still very nervous about passing on patients long term Participants often felt it was important to keep home and work separate, although this was not always perfectly carried out. While participants’ families were aware of their difficulties, they were not in a position to be able to offer effective support
Disgust damages relationships with patients
The personal experience of disgust
Feeling sadness alongside disgust Disgust mediators and moderators
An empathic connection makes them vulnerable
The importance of being an empathic professional Emotional entanglement
Holding it together
Working in palliative care
Disgust is taboo
How tough palliative care is Talking about difficulties, not disgust
Coping with disgust
Preparing Distraction
‘Checking in’
Passing on patients
Keeping home and work life separate
that can be very helpful in palliative care, so then, whatever horrors [ patients] go through, you’re not losing it.[…] You’re different from the person in the street who won’t look at them, or that charity workers who go there, you’re able to hold it.[…] They all disintegrate, because, you know, telling someone they’re going to die,[…]. So you’re sort of sitting there in the middle of this, sort of holding it. [Alex]
Here Alex described how she needed to be a source of calm and emotional support for patients. She drew on this skill when patients were emotionally ‘disintegrating’ on learning of their prognosis, and long-term, when she supports them through whatever ‘horrors’ they might face. While doing so causes her distress, she feels she has to hold this in, in order to remain calm and support her patients.
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Research Disgust damages relationships with patients
Disgust in relation to patients’ symptoms interfered with participants’ ability to be empathic professionals, and gain a holistic understanding of a patient’s needs. While participants tried to understand ‘what the person is really saying’ disgusting symptoms made it harder for participants to really listen to patients. In this case, Alex illustrated the difficulties she faced with disgust when conducting consultations. With any [consultation], you should be looking in a bit, and thinking ‘what is actually going on here’,[…] And I think the problem with, when there is a physical symptom that you find revolting, you end up with your own revulsion…overwhelming that view, so then you’re having to work even harder[…] to hear what the person is really saying to you, because you, you’re trying to deal with all the other stuff as well. [Alex]
Here, Alex described how she cannot ‘hear’ the patient in the same way she usually does during her consultation, and must therefore ‘work even harder to hear what the person is really saying’ to compensate. In addition to impairing participants’ ability to empathise with their patients, disgust also reduces participants’ desire to spend extra time with their patients. In this example, Fiona explained how she felt disgust affected the way she conducted assessments. … once you’ve done the assessment with them, it might reduce any social interaction you might have with that patient.[…] it’s a stepped approach. The first step has got to be about the symptom management. The second step in conversation is almost a social type bit, and although that’s very important, because these people have enough stigma that they get landed with […] once I’ve done the symptom management, the bit that I’m really there to do, anything else that I can give thereafter is a bonus. So if the bonus on that day is only a small bonus, then that’s the way it’s got to be. [Fiona]
Here, while providing socioemotional support was ‘very important’ to Fiona, she recognised that disgust ‘might reduce the time that you want to spend with the patient’. Consequently, sometimes participants desire to stay longer to provide emotional support was not sufficient to overcome their feelings of disgust, leading them to withdraw from the patient early, somewhat contrary to the conception of working in palliative care outlined in the importance of being an empathetic professional. Feeling sadness alongside disgust
In addition to our predefined characteristics of disgust, participants also reported an additional aspect to disgust: sadness. Caroline presented a particularly moving example of both extreme disgust and sadness, an sample of which is presented here: [I] was just trying to focus on the fact that he was, he was here with us and he needed our help. But try
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taking your, taking your eyes off this dreadful wound he’d got, it was awful.[…] I felt, erm, upset, really upset for him. [Caroline]
Describing the incident, Caroline assumes two different positions. First, she described her own position as a healthcare professional—her difficulty taking her eyes of the symptom, and her desire to help her patient. However, she also assumes the patient’s perspective; she tried to focus on the patient, that he needed her help, and crucially his symptoms made her feel ‘upset for him’. These two perspectives lead to two separate emotions. As a professional, the symptom is evaluated egocentrically, as something disgusting for her to look at and work with and is the root of her feeling of disgust. However, when assuming the patient’s perspective, the symptoms have a profound impact on her patient’s life, both medically and socially, for which she feels upset. Caroline’s descriptions of the wound as ‘dreadful’ and ‘awful’ can therefore be read very differently depending on which perspective is taken; as a professional, they imply disgust, but as a patient, they imply sadness. Participants did not report asking how patients felt about their symptoms. Instead they assume unquestioningly that their patients must feel ‘sad’ [Briony] about their symptoms, and adopt that sadness themselves. Therefore, participants may project their own feelings of sadness onto the patient. Alternatively, participants may be very sensitive to their patients’ sadness, and reflect that in their interviews. However, it is notable that participants did not explore what their patients felt in relation to their symptoms. Talking about difficulties, not disgust
Staff discussed interventions by focusing explicitly on the patient, and how the patient felt about the symptom. In the following extracts, Briony talked about her role as a team leader, and how they approached and talked about disgusting symptoms within the team. If we talk about it as a team, I think we talk about [interventions] not in the fact we found whatever is going on disgusting, but more how sad and how hard it must be [for the patient] to cope with[…] So we talk about it in terms of empathising with our patients. We don’t talk about it in terms of ‘oh my god, did you see that, that’s awful isn’t it?’[…] there’s a real distinction in there, and we’re very clear about that. [Briony]
In Briony’s example, the phrase ‘did you see that, that’s awful isn’t it?’ is focused on the professional’s own experience, not that of the patient. The ‘real distinction’ alluded to is between the empathic and egocentric ways of talking about disgust, a conclusion supported by the importance participants placed on being an empathic professional. By taking a patientcentered view and not being allowed to talk about their own feelings, staff may be more liable to project
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Research their own feelings onto their patients. This view is supported by her later comments: I know someone’s come to me and said ‘oh I know you’ve seen so and so’ or you know ‘oh that’s hard isn’t it’, and I say ‘yeah it is hard, I don’t know how she copes with it’, and they might say, you know ‘oh its difficult’, and I’ll say ‘oh I know’. [Briony]
When a colleague talked about how hard it was for them to see their last patient, Briony immediately reframed the conversation in terms of the patient by saying ‘I don’t know how she copes with it’. Her colleague’s response of ‘oh it’s difficult’ now implied it is difficult for the patient, rather than for themselves. This was an acceptable response for Briony, who then agreed with her colleague. However, while this was now in a format Briony felt was acceptable, her colleague has been encouraged to not talk about how difficult the situation is for her, but how difficult it is for the patient. While some projection of feelings appears to be going on, it is unclear whether staff were aware of this and talking about their own difficulties as the patient’s in order to get support. I might say ‘I found myself pinching my hand’ or something, so you might share strategies in that respect with one and other,[…], so I think you share strategies, and you discuss how hard it is for the patient. [Briony]
Interestingly, participants did not use the word ‘disgust’, instead they used terms referring to a difficulty, such as ‘hard’. Despite talking about how hard something was for a patient, Briony is able to recognise her that her colleague struggled with disgust. This allows her to share her strategies for dealing with disgust providing practical, rather than emotional support. DISCUSSION The combined analysis of all 15 subthemes produced several discussion points, each supported by at least three different subthemes, the three most relevant of which are discussed here. First, while participants experienced feelings of disgust in the course of their work, they saw it as unprofessional to acknowledge those feelings. Second, participants were highly focused on their patients’ medical, social and emotional needs, but may have neglected their own needs. Third, the feeling of disgust in participants did not appear to impact on the medical care offered to patients, but participants reported that it did reduce the socio-emotional support they were able to offer to patients. Disgust is unprofessional within palliative care
As predicted by Holmes et al,10 participants saw disgust as unprofessional. This had two effects. First, participants suppressed their feelings of disgust,
fearing their patient may recognise their feelings as disgust. Second, although participants felt they worked in a supportive team, they were afraid to express their feelings of disgust for fear of being judged by their colleagues. Participants avoided showing disgust around patients by suppressing their emotions. In addition to the health risks21 suppression uses cognitive resources,15 potentially increasing the risk of medical mistakes. Further, Gross and John14 suggested that those using emotional suppression were ‘less satisfied with themselves and their relationships, more pessimistic about their future, and more prone to depression’ ( p.360). While these issues were beyond the scope of the current interviews, emotional suppression could lead participants to a ‘troubled sense of wellbeing’ ( p.360). The belief that disgust was unprofessional caused it to become taboo within the workplace. Therefore, participants felt restricted to talking about their patients’ difficulties, or about delivering treatment to the patient, rather than their own difficulties with disgust. As a result, staff support often dealt with disgust implicitly, without directly acknowledging the thoughts and feelings participants experienced, and without using the term directly. While talking about disgust may not reduce the emotional impact of an experience, if participants were to talk about their feelings of disgust, they may feel better about these experiences, be able to better process these experiences, and see objective improvements in their physical health.22 23 Clinical supervision can address the psychological dimensions of palliative patient care, and is recommended,24 and beneficial.25 Participants focused on patients medical, social and emotional needs, neglecting their own
Disgusting symptoms would often trigger emotions secondary to disgust, such as sadness, which would require processing. However, although participants were highly focused on the medical, social and emotional needs of their patients, they tended to minimise or neglect their own emotional needs. Compounding this, participants felt they were unable to talk about their emotions, particularly disgust. Perhaps because healthcare professionals did not talk about their experiences of disgust, they may have found it hard to talk to their patients about it, and enquire about their lived experiences. In lieu of this, participants may have tried to gain an understanding of their patients experience through projective and empathic processes. While projecting their emotions onto patients may provide participants with a professionally acceptable outlet for their emotions, it also carries psychological costs. Participants’ emotional well-being may become linked to the emotional or physical well-being of their patients. They may feel that in healing their patient, they are healing themselves. Supporting this, several
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Research staff members went beyond what would normally be expected of them in order to ensure that they treated the patient. Equally, participants sometimes personalised their patients, linking their own emotional well-being to their patient’s health. Therefore, it is important that palliative healthcare professionals are given an outlet for their emotions to avoid projecting their feelings onto their patients, particularly given the often-deteriorating condition of patients in palliative care. Despite this, National Institute for Health and Care Excellence (NICE)26 only specifies that healthcare professionals in palliative care require support in dealing with loss, grief and bereavement, not for feelings of disgust or the ongoing suffering of their patients.
group discussion of past experiences of disgust at work may help participants recognise the ubiquity of disgust, and break the taboo. Third, by providing training on how to approach disgust with their team, managers may feel more confident in their ability to provide support for disgust, both in clinical supervision, and ‘checking in’ support. Finally, managers and clinical supervisors may benefit from additional training on emotions elicited alongside disgust, helping them to identify and support these emotions in their staff. By providing an outlet for these emotions, staff may be less likely to project their feelings onto their patients. Implications of findings
Disgust reduced patients’ socioemotional support
Disgust limited participants’ socioemotional support for their patients, likely reducing how supported patients felt. However, healthcare professionals are an important source of emotional support for patients.27 28 Equally, healthcare professionals are likely to be one of the few people patients would feel able to talk to about their diagnosis. Additionally, Slevin et al28 reported that patients who felt dissatisfaction with the support they received scored significantly higher on the Hospital Anxiety and Depression Scale (HADS29;). Finally, it was important to participants (and NICE quality standards26;) that they provide a holistic assessment of the patients’ needs, including their socioemotional well-being. It therefore seems likely that disgust, and the resulting reduction in socioemotional support, will have a direct impact on patients’ emotional well-being.
The analysis detailed the experience of six palliative healthcare professionals working with disgust. However, by taking an idiographic, rather than nomothetic approach, these results are not directly generalisable to other palliative or non-palliative healthcare professionals. Despite this, where these findings resonate with healthcare professionals, they do provide a framework by which to understand the likely experiences of those working with disgusting symptoms and suggestions for developing support structures. The results highlight the possible implications of disgusting symptoms on patients’ and professionals’ psychological well-being. It is therefore vital that frontline healthcare services, working with patients with potentially disgusting symptoms, consider whether their staff members are adequately supported to cope with, express, and understand disgust. Conclusion
Recommendations
While participants may need to suppress their emotions around patients in order to remain professional, the effects of this may be exacerbated by their inability to discuss disgust at work, requiring participants to ‘hold it together’. By breaking the taboo around disgust, participants may be able to access support, minimising the effects of suppressing and ‘holding together’ their emotions. The only time participants reported this had happened was when the taboo was broken by someone with perceived authority, such as a manager, who felt less fear of being judged for doing so. Therefore, a top-down approach, focusing on training and encouraging managers to break the taboo and provide support for disgust may be particularly effective. Training for managers and clinical supervisors on disgust is likely to require four elements. First, although participants reported feeling disgust, they often did not recognise it as disgust before taking part in the study. Therefore, providing psychoeducation on the nature of disgust, and its relationship to sadness may help managers identify disgust in themselves and others, and know when to provide support. Second, 194
Healthcare professionals experiencing disgust in the course of their work may be at risk of compromising both their emotional health and patient care. This is particularly true in environments where disgust is thought to be unprofessional, leading staff to suppress, deny and possibly project their feelings. These effects have not been previously identified or researched in healthcare professionals. While further nomothetic research is required to define the extent of these effects across settings, healthcare providers should consider what support their staff receive, and whether their work culture allows them to utilise that support for disgust. Contributors JM conducted research on the relevant background literature, finished the ethics and sponsorship application, arranged and conducted all interviews. He also transcribed, coded and analysed all interviews, and wrote the manuscript. HG came up with the original idea for the study, provided background research, started the ethics application, liaised with the NHS trust and staff to facilitate the study, sent the email inviting staff to take part, provided feedback and triangulation for the analysis, provided feedback and edits on the manuscript, and provided clinical supervision to JM. RH researched the ethical requirements and process for the study, took responsibility as chief investigator for the study, provided feedback and triangulation for the analysis, provided feedback
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Research and edits on the manuscript, provided academic supervision to JM, and is guarantor of this study. Competing interests None. Ethics approval Walsall Healthcare NHS Trust. Provenance and peer review Not commissioned; externally peer reviewed. Data sharing statement No additional data are available.
REFERENCES 1 Darwin C. The expression of the emotions in man and animals. London: Murray, 1898:254–77. 2 Barrett LF, Wager TD. The structure of emotion. Evidence from neuroimaging studies. Curr Dir Psychol Sci 2006;15:79–83. 3 Rozin P, Haidt J, McCauley CR. Disgust. In: Lewis M, Haviland J, eds. Handbook of emotions. 2nd edn. New York: Guilford, 2000:637–53. 4 Van Dongen E. It isn’t something to yodel about, but it exists! Faeces, nurses, social relationships and status within a mental hospital. Aging Ment Health 2001;5:205–15. 5 Goergen T. A multi-method study on elder abuse and neglect in nursing homes. J Adult Prot 2004;6:15–25. 6 Krey H. The problem of controlling one’s emotions in nursing education. An examination of how to deal with the feelings of disgust among 3rd year nursing students. Forum Qual Soc Res 2004;5. http://www.qualitative-research.net/index.php/fqs/ article/view/654 Mar 2014. 7 Lawton J. Contemporary hospice care: the sequestration of the unbounded body and “dirty dying.” Sociol Health Ill 1998;20:121–43. 8 Whitby P, Gracias S. Reflecting on the Francis report: this has happened before. Clin Psychol Forum 2013;249:13–7. 9 Francis R. Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry. London: The Stationery Office, 2013. 10 Holmes D, Perron A, O’Byrne P. Understanding disgust in nursing: abjection, self, and the other. Res Theory Nurs Pract 2006;20:305–15. 11 Gross JJ. Emotion regulation: affective, cognitive, and social consequences. Psychophysiology 2002;39:281–91. 12 Richards J, Gross J. Composure at any cost? The cognitive consequences of emotion suppression. Pers Soc Psychol Bull 1999;25:1033–44. 13 Ólafsson RP, Emmelkamp PMG, Gunnarsdóttir ER, et al. Suppressing disgust related thoughts and performance on a subsequent behavioural avoidance task: implications for OCD. Behav Res Ther 2013;51:152–60.
14 Gross JJ, John OP. Individual differences in two emotion regulation processes: implications for affect, relationships, and well-being. J Pers Soc Psychol 2003;85:348–62. 15 Gross J, Levenson R. Hiding feelings: the acute effects of inhibiting negative and positive emotion. J Abnorm Psychol 1997;106:95–103. 16 MacLeod S. The psychiatry of palliative medicine: the dying mind. 2nd edn. London: Radcliffe, 2011. 17 Smith JA. Beyond the divide between cognition and discourse: using interpretative phenomenological analysis in health psychology. Psychol Health 1996;11:261–71. 18 Smith JA, Flowers P, Larkin M. Interpretative phenomenological analysis: theory, method and research. London: Sage, 2009. 19 Ablett J, Jones R. Resilience and well-being in palliative care staff: a qualitative study of hospice nurses’ experience of work. Psychooncol 2007;16:733–40. 20 Noble S, Marie A, Finlay I. Challenges faced by palliative care physicians when caring for doctors with advanced cancer. Palliative Med 2008;22:71–6. 21 Demaree HA, Schmeichel BJ, Robinson JL, et al. Up- and down-regulating facial disgust: affective, vagal, sympathetic, and respiratory consequences. Biol Psychol 2006;71:90–9. 22 Pennebaker J, Zech E, Rimé B. Disclosing and sharing emotion: psychological, social, and health consequences. In: Stroebe MS, Stroebe W, Hansson RO, et al., eds. Handbook of bereavement research: consequences, coping, and care. Washington, DC: APA, 2001:517–39. 23 Finkenauer C, Rimé B. Keeping emotional memories secret: health and subjective well-being when emotions are not shared. J Health Psychol 1998;3:47–58. 24 Ramirez A, Addington-Hall J, Richards M. The carers families and friends as carers. BMJ 1998;316:208–11. 25 Jones A. Some experiences of professional practice and beneficial changes derived from clinical supervision by community Macmillan nurses. Eur J Cancer Care 2000;10:21–30. 26 National Institute for Health and Care Excellence. QS13: Quality Standard for end of life care for adults. 2011. http:// www.nice.org.uk/guidance/QS13 Mar 2014. 27 Dunkel-Schetter C. Social support and cancer: findings based on patient interviews and their implications. J Soc Issues 1984;40:77–98. 28 Slevin ML, Nichols SE, Downer SM, et al. Emotional support for cancer patients: patients: what do patients really want? Brit J Cancer 1996;74:1275–9. 29 Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiat Scand 1983;67:361–70.
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Breaking the taboo: an interpretative phenomenological analysis of healthcare professionals' experience of caring for palliative patients with disgusting symptoms Joshua Muggleton, Helen Guy and Ruth Howard BMJ Support Palliat Care 2015 5: 189-195 originally published online October 8, 2014
doi: 10.1136/bmjspcare-2014-000698 Updated information and services can be found at: http://spcare.bmj.com/content/5/2/189
These include:
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