Nothing about me without me: a scoping review of how illness experiences inform simulated participants’ encounters in health profession education

Abstract

Background

Person-centred simulation in health professions education requires involvement of the person with illness experience.

Objective

To investigated how real illness experiences inform simulated participants’ (SP) portrayals in simulation education using a scoping review to map literature.

Study selection

Arksey and O’Malley’s framework was used to search, select, chart and analyse data with the assistance of personal and public involvement. MEDLINE, Embase, CINAHL, Scopus and Web of Science databases were searched. A final consultation exercise was conducted using results.

Findings

37 articles were within scope. Reporting and training of SPs are inconsistent. SPs were actors, volunteers or the person with the illness experience. Real illness experience was commonly drawn on in communication interactions. People with illness experience could be directly involved in various ways, such as through conversation with an SP, or indirectly, such as a recording of heart sounds. The impact on the learner was rarely considered.

Conclusion

Authentic illness experiences help create meaningful person-centred simulation education. Patients and SPs may both require support when sharing or portraying illness experience. Patients’ voices profoundly enrich the educational contributions made by SPs.

Background

Role of simulated participants (SPs): expanding and professionalising

By integrating clinical scenarios into simulation-based education (SBE), learners can develop professional skills and behaviours in a safe and guided fashion.¹ The choice of modality in SBE is largely dependent on the clinical skills being developed. Manikin-based learning is well established in SBE, offering learning opportunities in rarely encountered or invasive skills, such as defibrillation or airway management.² Despite advances in technology and more life-like manikins, they often fall short of reproducing realistic human–human simulation experiences.³ Increasingly, simulated patient–participants or commonly SPs have come to fulfil this need.

Historically, Barrows established the concept of ‘proxy’ patients in the 1960s.⁴ The idea was to protect ‘real-life’ patients from the harm of multiple examinations. Since then, SP roles have expanded, diversified and become professionalised in education.⁵ SPs facilitate real-person, learning of a range of skills, from physical examination and communication to more complex role-play.⁶ SPs offer their human presence to simulation, representing illness experiences of patients, carers, families and others integral to patient care.^{7 8} However, the input of actual patients with lived illness experiences is often lacking.⁹ Overseen by clinicians, SP portrayals may focus more on narrow biological dimensions of illness (eg, range of movement in a knee examination) rather than emotional, psychological and social dimensions.¹⁰ The person with illness experience becomes a ‘phantom’ within secondary and tertiary depictions of their story¹¹ seen as simulacra.¹² In this way, SBE may unintentionally reproduce Foucault’s clinical gaze,¹³ prioritising objective findings over subjective experience and co-construction. SBE must seek to move beyond the paternalistic assumption that clinicians know best.¹⁴

‘Nothing about me, without me’: real patient experiences in SP roles

Greater integration of patients’ illness experiences¹⁵ in SP training and portrayals has been suggested. Nestel et al ¹⁶ and Plaksin et al ¹⁷ support the idea that real patients should contribute to role development and training, while Nestel and Bearman call for greater inclusion of real patients in scenario development.¹⁸ The medical regulator in the UK, the General Medical Council,¹⁹ has explicitly demanded evidence of Objective Structured Clinical Examination (OSCE) stations’ authenticity from a patient’s perspective and evidence of how SPs are supported in their roles.¹⁹ There has been little consistency in how best to integrate real illness experiences. Professional standards from the Association of Standard Patient Educators (ASPE),⁷ International Nursing Association for Clinical Simulation and Learning (INACSL)²⁰ and Association for Simulated Practice in Healthcare (ASPiH)²¹ do not report on involving patients in the consultation, design and implementation process.

From the position that SPs represent individuals with real lived illness experiences, we conducted a scoping review with the research question: how are real-life illness experiences used within SPs’ portrayals in simulation education?

Methodology

Research team

The research team included an academic nurse (LNC), a clinical simulation academic (GJG), a critical clinical researcher (JJ), a health profession educationalist (NMcN) and a health specialist librarian (RF). The research team continually engaged reflexively with each other.

In keeping with best practice, we recruited two advisors for personal and public involvement (PPI): a patient with illness experience and an SP.

Scoping review methodology framework

We used frameworks from Levac et al ²² and Arksey and O’Malley,²³ completing steps outlined in the PRISMA Extension for Scoping Reviews checklist.²⁴ We performed all six stages (ie, stage 1: identifying the research question, stage 2: identifying relevant articles, stage 3: article selection, stage 4: charting the data, stage 5: collating, summarising and reporting the results, and stage 6: optional consultation exercise ²³). In line with scoping review methodology, we did not formally appraise the quality of articles included.²⁴

Stage 1: identifying the research question

We used the ‘population, situation’ tool,²⁵ to help develop our research objectives. The ‘population’ was SPs, and the ‘situation’ was how ‘real illness experiences were represented by SPs in health professions education (HPE)’. Our scoping review set out to address the following research objectives:

1. How are the patient’s illness experiences gathered to inform SPs’ roles in SBE?

2. How do SPs represent these illness experiences in SBE?

3. What impact, if any, do real experiences of illness have on HPE learners?

Stage 2: identifying relevant articles

The team developed and refined a search strategy in consultation with a subject librarian (RF) who had expertise in health-related databases (box 1). In May 2019, five databases were searched: MEDLINE, Embase, Scopus, Web of Science and CINAHL with our full search strategy and terms.

Box 1. Search terms used, adapted for use with Web of Science.

TOPIC: ((patient* or client* or “service user*” or famil* or parent* or child* or carer* or caregiver* or mother* or father* or guardian* or person* or public* or individual*) near/5 (involv* or engag* or participa* or role* or real* or *centre* or *centercentre* or experienc* or view* or opinion* or feeling* or includ* or inclus* or *focus*))

TOPIC: ((health* or medic* or nurs* or “social care*” or “social work*” or “allied health*” or pharmac* or physio* or “physical therap*” or “occupational health*” or “occupational therap*” or dent* or midwi* or psych* or podiatr* or diet* or “speech and language therap*”) near/5 educat*)

TOPIC=(simulat* OR “standardi?ed patient*” OR “simulated participant*” OR “role$play*” OR “hybrid simulation*” OR “patient focused simulat*” OR actor* OR “programmed patient*")

We included a broad range of articles as legitimate sources of knowledge, including primary research (both quantitative and qualitative) and other articles including commentaries and editorials. To obtain knowledge that was relevant to our current practice, our searches were limited to the previous 10 years and English language-only articles. Unpublished literature was excluded. Our search resulted in an initial sample of 5437 citations which were exported to Covidence Systematic Review Software (Melbourne, Australia) for review.

Stage 3: article selection

From the initial list of 5437 citations, 2489 duplicates were removed, leaving 2948 articles. Two researchers (LNC and GJG) independently screened all 2948 abstracts, rejecting 2854 articles, not in scope. Conflicts between researchers in screening abstracts were discussed until consensus was reached.

Inclusion criteria were refined iteratively throughout.²³ We included articles that (1) pertained to SPs, (2) context of HPE and (3) used illness experiences from real patients. Articles were excluded if they did not meet the inclusion criteria. Of the remaining 94 articles, LNC and GJG read the full-text articles and excluded 76. Of the 18 articles identified, researchers found that patients and their illness experiences could be harnessed in various ways that were not initially considered by the research team. This led to a second review of titles and abstracts which identified a further nine articles. We conducted a hand search of the reference lists of our selected articles, which identified a further four articles. An updated search in May 2020 identified a further six articles. A total of 37 articles met the inclusion criteria (figure 1).

Figure 1.

Preferred Reporting Items for Systematic Reviews and Meta-Analyses flowchart of the screening and selection process.

Stage 4: charting the data

After reading the selected articles, LNC and GJG iteratively devised a data extraction template using Microsoft Excel (Microsoft, Redmond, USA) (see online supplemental appendix 1). Key demographic details were extracted, including authors, year of publication, journal, article location, methodological approach and relevant health discipline(s). Precisely, data relating to (1) who is representing the real illness experiences (ie, which type of individual was simulating an actual patient’s experiences); (2) training of SPs; (3) the nature and context of the SP role portrayal; (4) what aspects of real illness experiences were used by SPs in their role; and (5) the potential impact, or not, on the learner. LNC charted the selected articles’ data, which were then reviewed by GJG. Discrepancies were resolved through discussion with a third member of the research team (NMcN). Our PPI group (GH and RY) reviewed the template. Data extracted were checked for accuracy (LNC, GJG and NMcN).

Stage 5: collating, summarising and reporting the results

Quantitative and qualitative analyses were used to generate a ‘map’ of the included literature. Fundamental characteristics of the included articles’ distribution and nature were performed. Qualitative data were analysed thematically.

Stage 6: consultation exercise

We completed this optional step to share results with stakeholders, confirm relevancy and establish future research plans.²² Stakeholders were invited to participate in an online survey. The survey was tested and modified based on our PPI advisor’s feedback. Twelve stakeholders participated: students (n=4), SPs (n=2) and academics (n=6). The survey included three open-ended questions: What do you think the research team might have found? What are your thoughts on the findings from our scoping review? What do you think we should do next? and two embedded videos; one explained the purpose of the scoping review and the second video shared findings. Participants were asked for their initial thoughts on the research before sharing the second video. Opinions collected by the team verified that participants (n=8) confirm or agree with findings as they were ‘conducive’ or ‘aligning with their own experience’ and that they were ‘unsurprised’. The remaining (n=4) found the findings interesting or had predicted them. One participant did not provide an opinion on presented findings but provided suggestions towards future work.

PPI in this review

Personal and Public Involvement (PPI) advisors commented on the review question and search terms, reviewed an included article, data extract table and participant documentation, and assisted with developing the consultation exercise. They were not involved in screening abstracts. They helped with the development and testing of our consultation exercise survey.

Findings

Article characteristics

All 37 articles were published since 2008. They comprised quantitative (13), qualitative (10) and pilot studies (10), a review (1), a report (1), a programme review (1), and one was undefined (1). One was a randomised control trial, and one used grounded theory. The pilot studies ranged from mixed methods to phenomenology, to pretesting–post-testing, and the review was a meta-narrative review. The geographical spread of the 37 selected articles was as follows: North America (21) Europe (8), Australia (4), Asia (3) and Africa (1). Twenty of the publications were in general healthcare-related education journals; 14 of these were specific to medical education, 4 to nurse education, 1 to combined health profession education and one to radiology education. Most publications were from the discipline of medicine (25), followed by nursing (5), interprofessional (4), pharmacy (1), radiology (1), and speech and language therapy (1).

Who is representing the real illness experiences?

There was inconsistency in terminology: for example, articles from North America and Africa (n=18) often used the term ‘standardised patients’, but articles in other countries, including Europe, Australian and Asia, used the term ‘simulated patients’ (n=9). Some articles referred to ‘actors’ or ‘patients’ (n=7). A wide range of individuals were considered as SPs: individual actors,^26–30 members of the public who were not actors,^31–34 students,^{35 36} a person with the illness experiences portraying themselves^{29 37} or acting out a scenario similar in nature,^38–47 although not all studies defined SPs.^48–50 Educational SP roles included in OSCEs,28 30 44 51 examining,^{27 29 41} assessing,^{34 49 50} teaching,31 37 39 42 43 46 47 52 53 training32 35 36 38 45 54–57 or learning.^{26 40} Remaining articles focused on SPs or patients’ performance,⁵⁸ experience^{48 59} and involvement16 33 60 61 in simulation.

Training of SPs

There was ambiguity about what training, if any, was provided for SPs. Several articles reported that SPs were ‘trained’ without providing specific details.27 30 41 50 61 Four articles did not report any training.29 38 53 60 Three articles described ‘extensive’ training^{31 32 43} without providing any detail. Articles that did provide detail about SP training included information about content and format.35 36 41 45 46 51 55 56 58 59 Communication training (6 hours) focused on the essential components of SP roles and delivering feedback to students. Specific training (3 hours) was undertaken 1 week previously with a clinical specialist on the plan and expectation of the simulation activity. SPs receiving written information about all three cases, engaging in a dialogue of key features of each child’s presentation and viewing footage to understand the impact of his/her speech disorder,⁵⁸ details of the specific illness that SPs were trained for, are provided in a subsequent section. There was wide variation in the time taken to provide SP training—ranging from 3 hours 58–40 hours, 40 or more than 200 hours of SP interactions,⁵¹ and less specifically from one training session³⁴ to 8 weeks of training,⁴⁶ to five times per year.⁴⁷ Finally, one article highlighted the importance of creating a supportive environment, noting the potential vulnerability of SPs who may have had real illness experiences and not wanting to re-traumatise them.³⁷

Nature and context of role portrayal

Broadly, roles fell into three categories: communication interactions with learners, physical examination encounters or a combination. In all these interactions, the SPs’ role had been informed, to various degrees, by real illness experiences.

Often SPs were involved in a more communicative/consultation30 33 51 54 type of SBE activity. These interactions focused on challenging conversations⁴⁷ including delivering bad news,⁴² providing emotional support31 34 55 56 to HIV/AIDS individuals^{27 37 45} or discussing lifestyle behaviours relating to weight loss.⁵⁹ Several studies focused on learners’ attitudes⁵² in communicating with individuals with special needs, including persons with an intellectual disability,^{39 46} verbal³⁶ or visible disabilities^{40 41} and cerebral palsy.⁶⁰ Five studies focused on mental illness experiences such as assessing suicidal risk, those at risk of suicide,³⁸ alcohol detoxification³⁵ and emotional distress^{49 50} following self-harm and overdose.²⁶

In a smaller number of articles, the focus was on procedural skills.¹⁶ An actual representation of signs of illness was integrated into the SP role: for example, a recording of actual patient heart sounds^{28 57} or a transfer tattoo of a malignant melanoma.⁵³

What aspects of real illness experiences did SPs use?

Illness experiences were directly shared when SPs met⁶⁰ or observed real patients, or more indirectly gathered by illness accounts.^{16 26 31} For example, SP simulations were validated by focus groups of people living with HIV.²⁷ In one case, patients and family worked with the simulation team during training, including observation and feedback.⁵¹ In another article, SPs directly observed real patients, such as a patient going through alcohol detoxification.³⁵

In other articles, illness experiences were achieved by diverse and creative methods. Three articles described video narratives of people and families affected by intellectual and developmental disabilities.^{36 39 58} In other examples, SPs observed video footage of conversational interactions with individuals with aphasia,³⁶ and images of a child with a cleft palate.³⁰ Previous literature about patients’ preferences of how best to break bad news^{55 56} were also used.

Five articles used a direct representation of an individual’s illness for SPs’ roles in SBE.28 29 53 54 57 These focused on directly harnessing objective features of illness for use in physical examination scenarios. One article involved one person with a palpable breast mass facilitating a clinical breast examination for students²⁹; this has significant ethical implications. A patient diagnosed with malignant melanoma allowed an image of their cancer to be used to develop a realistic transfer tattoo of a melanoma.⁵³ This temporary tattoo was then applied to an SP body to enact the role of a patient with melanoma. In another article, an actual patient’s heart and respiratory sounds were electronically captured and reproduced audibly via a digital stethoscope when applied to an SPs’ chest.^{28 57}

Finally, several articles described how individuals with illnesses had decided to become SPs,32 34 37 38 42 46 49 50 drawing on their illness in their simulated role (although not portraying themselves).32 34 38 40–42 46 49 50 For example, individuals with HIV were scripted to portray a patient with HIV.⁴⁵ More often, such scripts were developed solely by healthcare clinicians and educators rather than in partnership with patients.30 32 34–36 42 45–47 58 59

Only two articles highlighted the need to provide support^{37 45} to real patients to reduce the risk of retraumatising them.³⁴ This risk appeared to be a factor in producing video footage rather than face-face contact with SPs. However, in two studies, individuals with lived experience of illness gained benefit from developing the SP role.^{44 48} Psychological safety or support of SPs was not mentioned in any articles in their portrayal of individuals with an illness.

Potential impact, or not, on the learners

The educational impact of incorporating real illness experience was referred to positively. For example, learners found this improved the realism^{16 35 53} of the scenario and contributed to the development of empathy^{31 37} and respect for dignity.³² Learners demonstrated an improved comfort with addressing difficult topics with patients.^{42 47} Students valued interacting with patients in their SP role but did not necessarily see a place for patient involvement in curriculum design.⁶¹

Overall, SPs’ involvement with a lived illness experience significantly improved and helped sustain learners’ confidence.^{38 47 54} In one study, medical students believed that the SPs were all real patients.²⁹ Learners disclosed positive changes in affect and understanding⁵² and an improvement in knowledge and skill levels when interacting with patients who were participating as SPs.36 40 41 44 51 52 Learners described the experience of interacting with SPs who had been informed by real illness experiences as eye-opening, powerful and beneficial to their education and future practice.³⁹ In contrast, learners reported anxiety and fear when trying to behave in a way that was appropriate for the person with the lived experience and the lecturer.⁴⁹

Discussion

Traditionally, SPs’ roles have been informed by the clinical gaze.^{9 11} Nestel et al ³³ urge us to think seriously and artistically of ways to include the person with the experience. An SP can be any person who is willing to take on the responsibility to portray an illness experience, irrespective of having had the illness experience. Central to their role is the need to represent authentic clinical encounters to benefit health professional development and training. It is recognised that such verisimilitude can create anxiety among learners,⁴⁹ but the advantage of realism in simulation is to help learners develop confidence which is transferrable to actual life contexts.36 40 41 44 51 52

There remain inconsistencies in the training of SPs and writing of patient roles. Many clinicians continue to excogitate patient roles without their involvement but yet describe their simulations as authentic. Such claims are misleading: it is suggested that authenticity is not achievable without real patient involvement.³³ There is growing respect for the contribution of patients’ illness experience to directly shaping practice.⁶¹ It is acknowledged that patient involvement is time-consuming.¹⁶ It all too easy to exclude patients from contributing by suggesting that they may be reluctant or are too sick to contribute.⁹

We advocate for developing a more patient-focused simulation methodology; a ‘complementarity model’ that values all stakeholders’ involvement in role development.^{9 16 51} We invite the simulation community to join us in advocating for transparently patient-focused simulation.

Recommendations

The impact of illness experiences on learners, SPs and patients needs to be further researched. Guidance on how best to conduct PPI when designing simulations would be helpful. Notably, there is a need to acknowledge a person’s psychological safety with lived experience when doing so. A further step will be to influence policy development via simulation societies (ASPE, INASCL and ASPiH) by changing current standards of practice to cocreate roles with all stakeholder’s involvement.

Limitations

Some relevant sources may have been omitted. The involvement of RF and development of a robust search strategy were designed to minimise this risk. Articles were limited to English language publications since 2008. No formal synthesis or quality appraisal was undertaken, reflecting the accepted methodology and intended focus on mapping.

The authors recognised that PPI advisors could have had a more active role in the screening and data extraction process but felt this would warrant monies, so they were recruited in a voluntary capacity with no obligations other than to provide comments at each stage.

Clinical educators’ knowledge and experience are valued as are those with the illness experience. Creating a holistic perspective embraces patient-centred education by involving all stakeholders. While such involvement is time-consuming, it enables educators to engage with patients, empowers SPs and enhances the learners’ experience.

Conclusions

Illness experiences are complex, personal and multidimensional, but the norm in HPE has been to focus on the biological representation of illness via the clinical gaze. There are growing obligations for a holistic approach that engages with the patient’s illness experience to inform SP roles. Methods to harness illness experience have been identified in this review. We have provided some practical examples to support the creation of meaningful person-centred simulations based on illness experiences. Patients must be suitably supported in sharing experiences. SP portrayals are increasingly complex and sophisticated, potentially also requiring additional support. By adopting an inclusive stance and inviting PPI, researchers can begin to narrow the gap in creating authentic patient-centred simulation experiences for healthcare learners.

Data availability statement

Relevant information is included in this article. Any further information is available from the authors upon reasonable request.

Ethics statements

Patient consent for publication

Not required.

Ethics approval

This review received ethical approval by the research ethics committee (School of Medical, Dentistry and Biomedical Sciences, QUB) for the collaboration stage of scoping review. Written informed consent was obtained from the participants.