Expert patient and general practitioners’ perspectives on the clinical attributes needed to deal with uncertainty: a qualitative study
Tania Ghosh 1 , Erik Blair
1 *
1
Abstract
Clinical uncertainty is not uncommon; however, the current conception of the professional clinician has meant that discussion on uncertainty has focused on elimination rather than recognition. Uncertainty comes from an imbalance in knowledge, data, clinical experience, evidence-based guidelines, judgement, and decision-making. There is a strong argument for improving tolerance of clinical uncertainty, particularly in primary care where general practitioners might be especially vulnerable to uncertainty due to their exposure to undifferentiated illness.
This research aims to establish expert patient and general practitioners’ perspectives on the clinical attributes needed to deal with uncertainty.
Two focus groups, consisting of three general practitioners and five expert patients, discussed uncertainty regarding restless legs syndrome. This topic was used as a rhetorical proxy to examine expert patient and general practitioner perspectives on the clinical attributes needed to deal with uncertainty. The qualitative data were then analysed to form overarching thematic areas.
Four overarching professional attributes were identified: collaboration, compassion, insight, and unconventional thinking. These are all attributes that lie within a clinician’s skillset, but the evidence here suggests that they need to be foregrounded in practice.
In attempting to assess professional clinical practice in relation to uncertainty, this research recommends that clinicians work to adopt a holistic, patient-centred approach, where they explicitly share uncertainties, focus on a patient’s emotional state during the diagnostic phases of treatment, and see the merits of challenging themselves to look beyond routine algorithms.
Keywords: ambiguous, analysis, competence, decision, diagnosis, expertise, professionalism, RLS.
| WHAT GAP THIS FILLS? |
| What is already known: Dealing with uncertainty in medicine is troublesome. General practitioners are vulnerable to uncertainty due to their exposure to undifferentiated illness. Patient encounters, especially with those suffering from ambiguous conditions, can foster introspection within clinicians. |
| What this study adds: This qualitative study suggests that conceptualising uncertainty as a holistic challenge, and implementing a bio-psycho-social problem orientation may help clinicians manage uncertainty in a manner that leaves the patient feeling positively supported and the clinician feeling positively inquisitive. |
Introduction
Uncertainty is common in medicine and arises when clinicians become aware of their lack of understanding of what is presented to them and their resultant inability to predict what might happen in the future.1,2 Uncertainty is a complex medical phenomenon consisting of the conscious recognition of gaps in understanding, and may impact clinicians at the personal, practical and scientific level – determining how they perceive their role, their actions, and their professional discernment.2,3 Uncertainty can trigger affective reactions in clinicians, decreasing their levels of resilience and reducing their levels of compassion.3,4 General practitioners (GPs) may be especially vulnerable to uncertainty due to their exposure to undifferentiated illness.5,6
Pomare et al. outline 10 types of uncertainty experienced by clinicians, including ethical, existential, and procedural uncertainty; however, their review found that the greatest focus of research on uncertainty was in relation to diagnosis.2 The scale of presentations and the inherent generalist role of a GP means that diagnostic uncertainty is inevitable in primary health care.4 Wallis highlights one of the great dilemmas of primary care in suggesting that patients anticipate that GPs will act on their presentations and GPs feel obliged to be seen to act, despite their uncertainty.6 This ‘need to act’ is marred by the limited number of enquiry methods available to GPs, orthodox testing procedures, and established probabilistic clinical thinking strategies.7 When symptom presentation cannot be understood by biomedical knowledge, GPs might try to adopt new consultation approaches and work to expand their knowledge base, but they are likely to be constrained by established medical approaches and consultations may be impacted.8
In dealing with uncertainty, GPs might find themselves trying to balance their own legitimate ignorance with the desire to support their patient’s needs. In this way, uncertainty impacts both the patient and the primary care practitioner, a situation that may impact diagnosis and hamper the patient–practitioner relationship.4,9 When faced with uncertainty, clinicians are likely to have affective reactions.3,7 Patient encounters, especially with those suffering from ambiguous conditions, can foster introspection within clinicians.9 Supporting clinicians to comprehend the relationship between uncertainty and the realities of practice is likely to lead to deeper understanding of the needs of the clinician, the needs of the patient, and the interrelationship between the two.10 Restless legs syndrome is one such condition with an atypical presentation that can lead to tension between the doctor’s and the patient’s interpretation. Here, we explore the experiences, perceptions, challenges, and practicalities of managing uncertainty – using restless legs syndrome as a rhetorical proxy – to develop a stratified understanding of the clinical attributes needed to deal with uncertainty.
Restless legs syndrome
Restless legs syndrome (RLS) is both a sleep disorder and a movement disorder. It is a chronic neurological condition with a significant psychiatric impact, usually managed in primary care settings. Population-based studies suggest its prevalence is 5–13% in Europe and the United States.11 Despite its prevalence, RLS can be misunderstood as trivial; however, due to persistent discomfort at rest and troublesome impact on sleep, RLS considerably impacts a patient’s quality of life.12 Its pathophysiology is unclear, although there is a familial component. It has been linked to brain iron deficiency and dysregulated dopaminergic systems.11 When a patient with RLS first presents, GPs can misdiagnose the patient with attention-deficit/hyperactivity disorder (ADHD) or psychological problems or fail to reach a diagnosis at all.13 Patients may feel unheard, confused and alone. Even if a patient is successfully diagnosed with RLS, pharmacological management is complex. The first-line medication recommended by the National Institute for Health and Care Excellence (NICE) guidelines is dopamine agonists, which can have serious side effects of augmentation (severe worsening of symptoms), impulse control disorders, and loss of efficacy.14
Methods
Data gathering took place in the Spring of 2023. Two focus groups were conducted to gain insider perspectives.15 One with each of the key stakeholders: GPs and expert patients with RLS. GPs in the United Kingdom, where this research took place, are primary care clinicians, providing medical services in their local community, treating common conditions and referring patients to hospitals and other services. Expert patients (EPs) are individuals living with long-term health conditions; they become ‘expert’ through personal insight, knowledge and understanding of the management of life with chronic disease. Separation of the stakeholders was intentional. Because the aim of the focus groups was to inductively explore participants’ views and experiences, smaller, segregated groups were deemed appropriate.16,17 EPs may feel uncomfortable disclosing instances they might think to be medical carelessness in front of clinicians. Similarly, GPs may be hesitant to admit a lack of knowledge in front of patients. Recruitment was carried out via a secure, email account. The charity, RLS-UK, that aims to raise awareness of RLS, was contacted to recruit the EPs. The researchers are members of a medical school and had access to partner GPs, who were recruited directly via their email addresses.
The focus groups were conducted online to avoid the inconvenience of commuting to the research context (a major medical school in London, UK), especially for the EP group, who lived in various cities across England. To enhance social dynamics, participants were requested to keep their cameras on throughout. Focus groups were selected as the most appropriate method of data collection as they allow for an interpersonal relationship between participants, and it was hoped that this would help create a supportive environment for both cohorts. Because of the nature of the participants, the cohort size was always likely to be small, something that is also suited to the use of focus groups. Finally, it was felt that focus groups would stimulate debate, discussion, and clarification, and would facilitate the in-depth exploration of beliefs.15
Focus group questions
The following questions were prepared ahead of the two focus groups and used as prompts to start discussion. Following participant responses, further exploratory probes and prompts were used to elaborate on the points raised:
How common do you think RLS is?
How easy do you think it is to diagnose RLS?
Do you think it is fair to say that many people living with RLS are misdiagnosed? (Why?)
Do you think clinicians experience uncertainty when presented with RLS? (Why?)
Tell me about the frustration that patients may feel when trying to get an RLS diagnosis?
What is the impact of RLS on a patient’s quality of life?
The focus group sessions were recorded and manually transcribed via intelligent verbatim.18 This approach was intended to ensure maximum readability without altering the meaning of the participant data. To maintain confidentiality, identifiable information was redacted, and participant names were replaced by pseudonyms (GP1, EP2, etc). After transcription was completed and pseudonymised, the recordings were deleted. The transcripts were uploaded onto NVivo software for analysis. Reflexive thematic analysis was used to code and theme the data.19,20 Data were examined for codes, similar codes were merged into initial themes, and close reflexive scrutiny of these initial themes was used to generate the final themes. This reflexive approach is not simply a case of dogmatically following a thematic analysis protocol, but involves researchers being aware of their own epistemological and ontological biases and using thoughtful reflection to engage with the data to find the nuances within it.20 In this way, the coding of the data was not merely procedural, it involved reflexive scrutiny of the transcripts to find the meaning within them.
Results
Two focus groups were conducted with three GPs and five EPs. Data analysis identified four thematic clinical attributes needed to deal with uncertainty: collaboration, compassion, insight, and unconventional thinking.
Collaboration
To balance uncertainty, the GPs suggested taking a collaborative approach by asking patients about their ‘ideas, concerns, and expectations’ (GP1) early in the consultation and using these to gauge whether the consultation had been successful.
… a consultation as a conversation between two equals. (GP2)
Shared decision-making and patient-centred care was mentioned by both focus groups. They suggested that this is achieved by active listening, honesty and balancing the doctor–patient agenda. GP2 stated that to reach a diagnosis of an underrepresented condition like RLS, a rich picture of the patient’s presentation is required through rigorous, holistic, history taking. GPs also mentioned that making a diagnosis was not the only outcome that patients were looking for.
Some patients don’t necessarily want a tablet. Some patients don’t necessarily want investigations. Some patients just want to be reassured. (GP1)
Both focus groups reported active listening as a core consultation skill. GPs suggested active listening has information gathering and therapeutic elements, and that these were especially important when there is no clear treatment algorithm.
[if] you want to learn about restless leg syndrome, go to the patients. (GP2)
The EP focus group reported that patients can have high expectations regarding diagnosis but also appreciated the difficulties with this.
We expect an immediate solution and there can’t always be one. (EP3)
The patient group was empathetic to doctors, reporting that they did not expect doctors to know everything; however, they did expect doctors to be willing to listen to their comments and investigate their concerns. This perspective was augmented by GP3 who said that when GPs vocalise areas of uncertainty, this enables them to benefit from the expertise of others - facilitating shared medical decision-making. In this way, both groups highlighted the role of collaboration as more than just a diagnostic tool but as a means of dealing with uncertainty.
The EP group reported that poor sleep drastically impacted their quality of life, and that advice on this was likely to be one of their priorities. Both focus groups reported that general advice on good sleep hygiene was given during consultations, but the GP focus group also mentioned that it might be the case that symptoms that GPs are more comfortable managing were initially foregrounded. In this way, although the GPs felt that good patient care was provided, they may be left with lingering doubts about whether they got to the root of the issue.
Compassion
A compassionate doctor may not directly improve a patient’s quality of life but can provide vital support for patients living with difficult-to-diagnose conditions. The focus groups felt that uncertainty increases if it presents within an underrepresented group; therefore, understanding the needs of the patient needed to be foregrounded. Specific underrepresented groups mentioned by the participants included children, who are commonly misdiagnosed with ADHD, and elderly people who might also suffer from dementia. Reaching a diagnosis in these groups was reported as involving sympathetic understanding alongside data gathering.
… you’ve got to gather all of the clues, all of the bits of information you can to lead to a diagnosis. (GP2)
Examination and evaluation are core aspects of clinical decision-making. Both focus groups recognised that when dealing with rarely presenting conditions, clinicians might feel frustrated when they cannot offer a robust diagnosis, and encouraged clinicians during this period to focus instead on the impact of the presentation on a patient’s quality of life. The EP focus group highlighted that because of the time it takes to get a diagnosis, it was important they felt their GP was with them throughout the process. This sentiment was echoed by the GPs.
It’s not just let’s make a diagnosis and make you better. It’s “I’m here”. (GP2)
Both groups appreciated the impact RLS can have on quality of life. One consequence of the disease is a lack of sleep. This leads to excessive daytime sleepiness, affecting patients’ ability to be alert at work, their relationships, and their mental health. One patient described restless legs syndrome as:
It’s like someone has got you on a wind-up cog and they have started to wind you up and wind you up and wind you up until they can’t wind you up anymore. (EP2)
The description above demonstrates the frustration that patients may feel. Although a clinician might not be able to diagnose RLS, they can surely recognise the impact of such a scenario and feel compassion for the individual. Although the example above suggests a situation in which a patient might feel exasperated, RLS can sometimes lead to much more serious outcomes.
If untreated, it is unbearable and it has the highest suicide rate for any neurological disease in the UK. (EP2)
The focus groups highlighted how uncertainty can be frustrating – for the patient and the GP – and reported that dealing with uncertainty should involve honest discussions. Both focus groups reported the importance of the wider aspects of clinical care and the importance of GPs being compassionate.
Insight
The discussions in both focus groups highlighted the importance of insight into the specifics of a condition, which is gained through education and insight into the lived experience of patient suffering. Both focus groups reported that diagnosis of rarely presenting conditions was not a speedy process, but felt that more needed to be done to enhance GPs’ knowledge base. The GP focus group identified a knowledge gap concerning RLS and felt that this gap resulted in low confidence in managing the disease. This was echoed by the EPs who attributed this to a lack of research into RLS, with one suggesting that the solution is ‘to make research into RLS sexy’ (EP3).
The EP focus group suggested that medical ignorance may be the result of poor education, with doctors not updating their knowledge. The GP focus group was more positive and felt that clinicians were committed to educational development, but that curricular foci had meant that certain presentations were foregrounded.
I want education, education, education of the medical profession. (EP1)
We are taught that common things occur commonly, but my follow up to that is so do rare things but only one at a time. (GP3)
The GPs argued that RLS is too rare to warrant specific teaching sessions within the dense medical curriculum and instead argued greater insight would be garnered through having more discussions with colleagues on the concept of medical uncertainty itself. However, the patients argued that overlooking things that rarely present was wrong; they felt that real insight would be established through specific education initiatives and that the issue was that there was bias in medical education towards common, life-threatening ailments.
As well as seeking enhanced knowledge-based insight, both focus groups reported the benefits of having insight into the patient experience. This was highlighted in discussions on the first-line management of RLS where some recommendations had caused augmentation in patients. Augmentation is a term used to describe the sudden worsening in symptom severity; for example, in the case of EP2, after starting treatment with a dopamine agonist:
When I was going through augmentation… I would have a knife and stab myself with a knife to inflict pain because… I can handle pain. (EP2)
The experience highlighted by EP2 is terrible and, in such a case, GPs do not need to have certainty in order to understand the needs of the patient. In this way, having insight might be thought of as dealing with uncertainty through empathy, understanding, and compassion. Because it is not possible for clinicians to have deep knowledge of all conditions, it might be more fruitful to see uncertainty as a neutral norm of clinical practice rather than treating uncertainty as a deficit.
Unconventional thinking
The data from the focus groups revealed that a clinician’s ability to think broadly is an important attribute, especially when dealing with ambiguous conditions. Although the GP focus group indicated paradigmatic problems in trying to think beyond the medical model, highlighting issues in trying to step outside of the methods that they had been trained to use, the EP focus group suggested that this type of thinking might lead to more personalised care during times of uncertainty.
… we are all different and I think that’s what makes RLS so difficult to diagnose because we are not saying the same thing but suffering from the same thing. (EP4)
The GP focus group also highlighted an issue with ambiguous presentations, reporting that it made it tricky for them to identify the appropriate investigative options. They reflected on the medical model of speciality-based medicine and identified that underrecognised conditions with atypical presentations may not always be sent to the appropriate secondary care services because they do not fit into one of the predetermined boxes.
…no, that doesn’t fit. Doesn’t fit my algorithm. (GP1)
The GP focus group also reported some confusion among medical students when they first experience ambiguity and felt that the rigid medical models taught in medical education exacerbated this confusion. They acknowledged the importance of providing students with insight into uncertainty, but suggested that it was hard to know where this would fit in the medical curriculum.
Despite suggestions from the GP focus group that it was important to think outside the box, when asked how they would approach a patient who presents with a constellation of symptoms they did not understand, their response was systematic and linear, which they realised was the ‘medical model’. This perspective was supported by the EP focus group who suggested that GPs seem to follow a set of procedures that they felt were unrelated to the presenting complaint. Here, we see the tension between the medical model of enquiry and the need to incorporate some unconventional thinking when there are ambiguous conditions with atypical presentations.
Discussion
Dealing with uncertainty involves collaboration, compassion, insight, and an ability to embrace unconventional thinking. The experiences of the participants with RLS serve as a cautious reminder that evidence-based medicine alone can be problematic in dealing with uncertainty.21 Instead, the findings here highlight the importance of wider attributes that lie within a clinician’s skillset, which need to be foregrounded in practice.
Clinicians can find it difficult to communicate their clinical uncertainties and this can lead to tension between patient and clinician;2 however, collaboration between patients and clinicians may help mitigate the emotional baggage that comes with uncertainty.6 Thus, clinicians can make a virtue of legitimate ignorance – using it as catalyst for stronger patient relationships and wider thinking. Focussing on compassion has the potential to enhance patient care and to improve clinician’s self-care.22–24 High levels of compassion have also been found to correlate to a tolerance for uncertainty.3 Providing compassionate care is a foundational attribute of any healthcare worker and a fundamental patient right.7,25 An insightful worker is desirable in every profession, and medicine is no exception; however, it is not just knowledge that supports clinical practice, but also the awareness of personal needs and the needs of patients.9,10 In this way, insight can enhance understanding, and clinicians can become comfortable with the factors within their control and the factors outside of their control.3 Learning to deal with medical uncertainty involves building enhanced relationships with patients alongside building personal biomedical knowledge.8,10 Optimum patient care can be enhanced through curiosity and a drive to serve patients through engaging with the wider aspects of clinical practice – moving away from algorithmic approaches and using unconventional thinking as a tool for engaging with uncertainty.6,7 Clinicians are trained to know that ‘common things occur commonly’ (GP3) and this is likely to lead to them adopting established medical approaches.8 The counterpoint to this is that uncommon things happen rarely and therefore need unconventional approaches. In learning to accept these maxims, clinicians are likely to see uncertainty as an incentive for enhancing their methods of enquiry.
Not everything in medicine is knowable – uncertainty is therefore to be expected.4 The trouble is that if presentations cannot be explained by biomedical knowledge, this can negatively impact the doctor–patient partnership and can lead to clinicians engaging in critical self-analysis.9,10 The deficit model of uncertainty sees it as something to be eliminated, but clinicians are problem-solvers and, like all problem-solvers, should consider uncertainty to be a bio-psycho-social challenge to be faced. Instead of trying to remove uncertainty, it should be seen as a catalyst for wider enquiry and a point of connection with patients. Through conceptualising uncertainty as a holistic challenge, clinicians can enhance their cognitive flexibility, in turn increasing resilience to future uncertainty, increasing empathy and reducing burnout.3,7,10
Strengths and limitations
The main strength of this paper is that it gave participants a voice. Patients with RLS can sometimes feel overlooked and the EPs here helped give them a sense of agency. Similarly, GPs may have felt disinclined to discuss uncertainty as there are certain pressures on clinicians to come up with answers. This study has given voice to something that many patients and clinicians may have experienced, and the excerpts from the focus groups are evidence of alignment between the overarching themes that were found and the participants’ perspectives. The limitations of this work include the fact that both focus groups were quite small and self-selected. This means that the data are representative of the participants but is not necessarily universal. A further limitation of the small sample size is that we are not able to report the demographic characteristics of either group of participants. Successfully running focus groups can be tricky; there is a need to balance the participant voice with the needs of the researcher. Trying to address research aims within a limited time means that some points raised were not fully explored. This means that results never fully communicate the thoughts of the participants. The qualitative coding of the data might also be seen as a limitation as different researchers might code data in different ways. There was inter-rater checking of data coding, but this happened towards the end of the coding process – there is scope to consider using pre-coding calibration of the coding team. Future work may wish to explore these findings with larger focus groups, larger data sets, and/or running inter-rater calibration events ahead of the data coding process.
Conclusion
In conceptualising the clinical attributes needed to deal with uncertainty, this research recommends that clinicians adopt a holistic, patient-centred approach, where they explicitly share uncertainties, focus on patients’ emotional state during the diagnostic phase, and see the merits of challenging themselves to look beyond routine algorithms. Implementing this type of bio-psycho-social problem orientation may help clinicians manage uncertainty in a manner that leaves the patient feeling positively supported and the clinician feeling positively inquisitive.
Data availability
The data that support this study cannot be publicly shared due to ethical or privacy reasons.
Acknowledgements
We would like to acknowledge the support of Dr Esther Murray, who gave conceptual guidance to the early stage of this project.
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