Received: 16 September 2021 | Revised: 26 May 2022 | Accepted: 27 June 2022 DOI: 10.1111/jan.15364 ORIGINAL RESEARCH: EMPIRICAL RESEARCH – MIXED METHODS Transformative learning experience among nursing students with patients acting as teachers: Mixed methods, non-­randomized, single-­arm study Maria Feijoo-­Cid1,2 | Rosa García-­Sierra1,2,3 | Rubén García García4 | Helena Ponce Luz5 | Maria Isabel Fernández-­Cano1,2 | Mariona Portell6,7 1 Department of Nursing, Faculty of Medicine Universitat Autònoma de Abstract Barcelona, Campus Bellaterra, Barcelona, Aim: To examine the effects of expert HIV patients acting as teachers to Spanish Spain 2 Grup de Recerca Multidisciplinar en Salut nursing students both on their HIV-­related knowledge, attitudes and practices and i Societat (GREMSAS), (2017 SGR 917), on their approach to the care model as well as to explore their learning experience. Barcelona, Spain 3 Design: Non-­randomized, single-­arm study with quantitative before and after meas- Research Support Unit Metropolitana Nord, Primary Care Research Institute urements and qualitative data. Jordi Gol (IDIAPJGol), Mataró, Spain Methods: The intervention consisted of five 90-­min workshops led by two women 4 Anaesthesia, Resuscitation and Pain living with HIV. Thirty-­four nursing students participated, and quantitative and Management Department, Hospital Universitari Vall Hebron, Barcelona, Spain qualitative data were gathered from February to June 2018. We used the Patient-­ 5 Emergency Unit, Hospital Universitari Practitioner Orientation Scale (PPOS) and the KAP questionnaire on HIV/AIDS to col- Vall Hebron, Barcelona, Spain 6 lect quantitative data. Departament of Psychobiology and Methodology of Health Sciences, Results: Statistically significant differences were found in the global score for care Universitat Autònoma de Barcelona, orientation and its two dimensions, caring and sharing. About the changes resulting Campus Bellaterra, Barcelona, Spain 7 Grup de Recerca i Innovació en Dissenys from the workshops, the quantitative results—­more patient-­centred care perception (GRID) (2017 SGR 1405) and better attitudes towards people living with HIV—­match the qualitative findings in Correspondence all the aspects studied, except in sharing. Rosa García-­Sierra, Carrer Mare de Déu de Conclusion: Incorporating expert patients as teachers in the nursing bachelor's de- Guadalupe, 2. 08303 Mataró (Barcelona). Spain. gree resulted in more patient-­centred care and improved knowledge, attitudes and Email: rgarciasi.mn.ics@gencat.cat practices. The workshops conducted by qualified expert patients showed transforma- Funding information tive learning power, as the participants improved professional and personal aspects. Gilead Sciences KEYWORDS expert patient, intervention studies, nursing, nursing education, patient participation, patient-­ centred care, people living with HIV Study Registration: The study protocol was registered retrospectively in The Open Science Framework (OSF) under DOI 10.17605/​OSF.IO/Z2AM7. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made. © 2022 The Authors. Journal of Advanced Nursing published by John Wiley & Sons Ltd. J Adv Nurs. 2022;00:1–13.  wileyonlinelibrary.com/journal/jan | 1 2 | FEIJOO-­CID et al. 1 | I NTRO D U C TI O N some research also identifies the need for more longitudinal studies, since most are conducted in the same context—­the UK—­and present The current global literature indicates that people living with HIV small samples at a single centre, thus making it difficult to generalize either receive low-­quality care or are discouraged from seeking results (Scammell et al., 2016; Towle et al., 2010). Furthermore, a care due to HIV-­related stigma and the negative attitudes of health systematic review by Scammell et al. (2016) states that more mixed professionals (Krause & May, 2016). Nursing students also express methods research is required to evaluate the impact of patient par- these conflicting attitudes. Academics concerned by this situation ticipation in the person-­centred approach. have promoted several strategies to address it, such as the engage- Taking all this into account, the problem must be approached in a ment of people living with HIV in teaching specific issues (Spencer way that paints a comprehensive picture by combining complementary et al., 2011). The inclusion of patients in medical education has been kinds of data. Further experimental research about people living with defined as a truly patient-­centred model (Bleakley & Bligh, 2008). HIV in nursing education should be conducted to evaluate the impact it has on reducing the bias of professionals, expanding patient-­centred care and the learning experience from the students' perspective. 2 | BAC KG RO U N D Since the 1970s, there have been initiatives to get patients involved 3 | TH E S T U DY in the education of medical and nursing professionals and social work- ers (Towle et al., 2010). Spencer et al. (2011) describe two educational 3.1 | Hypotheses initiatives engaging people living with HIV: the first involved patients as educators in the training of medical students about outpatient care and Including patients living with HIV as teachers in the undergraduate the second, in 2001 at McMaster University, included two people living nursing degree enhance patient-­centred care. with HIV in a program that used a problem-­based learning methodology. Including patients living with HIV as teachers in the undergradu- Years later, Feijoo-­Cid et al. (2017) published an article about a woman ate nursing degree enhance the knowledge, attitudes and practices living with HIV in Barcelona who shared her illness narrative with nurs- of nursing students towards those patients. ing students. Since 2010, the Division of Health Care Communication at the University of British Columbia has engaged expert patients living with chronic conditions (including a person living with HIV) as mentors 3.2 | Aims in the training of healthcare professionals (Towle et al., 2016). Patients are often invited to get involved in health education This study aims to examine the repercussions of expert HIV patients by sharing their experiences and answering students' questions acting as teachers to Spanish nursing students. For this purpose, (Spencer et al., 2011). Alternatively, they may take on the role of three specific objectives were developed (1) to assess HIV-­related teacher, advising and/or evaluating the communication and clin- knowledge, attitudes and practices of nursing students before and ical skills of students (Bokken et al., 2008) or become their men- after the intervention of patients as teachers; (2) to explore changes tors (Towle et al., 2014). The benefits resulting from patients acting in nursing students' care orientation after the intervention and (3) as teachers mainly pertain to technical and communication skills, to explore students' perception of the impact of the intervention on empathetic understanding and the development of an individual- their knowledge, attitudes and practices. The research questions are ized care approach (Spencer et al., 2011). Patients prefer a patient-­ (1) What changes can be expected when HIV patients act as teach- centred approach as it better serves their interests; in this approach, ers in the classroom? (2) From the students' perspective, what im- professionals place patients at the centre of care, recognizing that pact does the teaching intervention have on their education? they are people first, putting down their pen and listening to under- stand the visible and invisible impacts of living with chronic condi- tions (Cheng & Towle, 2017). However, it is complex to assess the 3.3 | Design effectiveness of patient engagement in nursing education or in other programs for health professionals since it is hard to state what kind This study was co-­designed with one of the expert HIV patients who of patient engagement is most effective and what the outcomes are led one of the workshops. (Perry et al., 2013; Scammell et al., 2016). The study protocol was registered retrospectively in the Open Various pieces of evidence point to the need for longitudi- Science Framework (OSF) under the registration DOI 10.17605/​ nal evaluations on the potential for transformative learning from OSF.IO/Z2AM7. patients (Scammell et al., 2016; Towle et al., 2010). These studies We conducted a non-­randomized, single-­arm study with quan- highlight that qualitative evidence is more abundant, as most have titative and qualitative data to answer the research questions. Both explored the perception of the value of involvement: what students types of data were given equal emphasis, and both sets of results were learned, the strategies that were useful for patients to recount their included in the interpretation. The intervention for people living with experiences and/or the benefits of their engagement. However, HIV consisted of five workshops led by two women. This intervention FEIJOO-­CID et al. | 3 was conceived as a single-­arm, mixed methods study with evaluation engagement, in this case, corresponds to the fourth degree of the before and after. For this reason, the protocol available in OSF is de- Spectrum of involvement (Towle et al., 2010): ‘Patient-­teacher(s) are scribed as a mixed methods design. The best nomenclature for the involved in teaching or evaluating students’. The workshop curricu- study design is ‘mixed methods, non-­randomized, single-­arm study’. lum was developed following the expert patient's criteria and the The philosophical perspective chosen was pragmatism: In the prag- patient-­reported outcome for HIV (Engler et al., 2017). A patient-­ matic approach, we ask ‘What is needed to address the research ques- reported outcome is a report-­based measure of patient health status tion?’ and we look for the best method to respond to the question. taken directly from the patient without a physician or anyone else That implies that the researched topic is contemplated from all possible modifying or interpreting the patient's response. Additionally, the angles and uses all available tools to find a complete answer (Hesse-­ expert HIV patient suggested using the gender perspective to guide Biber, 2015). The mixed methods format is a result of the pragmatism the content given that, worldwide, women are more affected by HIV paradigm (Coates, 2020). Thus, quantitative data from this evaluation aim than men, even though, in our country, HIV prevalence is higher to answer the first question, whereas qualitative data answer the second. among men who have sex with men. The intervention structure can Qualitative data will also contribute to a better understanding the quanti- be found in Appendix S1 and the workshop content is available in tative data. We used a content analysis approach for the qualitative data Table 1. and a non-­randomized, single-­arm design for the quantitative data. The intervention combines in-­person teaching with e-­learning Registration in OSF was done retrospectively because, at the using Moodle (Modular Object-­Oriented Developmental Learning time of the intervention, the protocol did not meet the medically Environment). Before each workshop session, students received focused eligibility criteria since it was an evaluation of the impact of instructions to read three papers related to the content of each an educational intervention, and it included a qualitative evaluation module (see Table 1), search for more information on their own and process. Following the intervention, we learned of the possibility of upload a topic-­related essay (all on the Moodle platform). publishing the protocol as a registered report hosted in the OSF to improve the consistency and quality of the study. 3.3.2 | Recruitment of expert patients 3.3.1 | Intervention design and level of Inclusion criteria for the recruitment of expert patients were as fol- patient engagement lows: being a woman with expertise in her condition or extensive experience in dealing with the healthcare system, experience in The intervention consisted of five weekly workshops lasting 90 min group facilitation and the ability to communicate and articulate her each, led by two women living with HIV acting as teachers. Patient experience of living with HIV (Towle & Godolphin, 2015). We used TA B L E 1 Content of workshops February 2018 Workshop 1 Impact of diagnosis: Evolution of the impact of facilitated by two expert women living diagnosis. Aspects persisting in collective with HIV as teachers perception; gender-­sensitive approach. Importance of the testing. Quick test. Pre-­and post-­diagnosis counselling: current situation of HIV; what does living with HIV imply; peer support; reliable healthcare team. Workshop 2 Self-­management of health: Whom to the share diagnosis with, when, how. Prevention of transmission and responsibility for one's own health. Workshop 3 Long-­term treatment: Incorporate treatment in daily life, side-­effects management (when medical specialities divide us) March 2018 Workshop 4 Physical well-­being. Emotional well-­being: Sexual and reproductive health. Gender-­sensitive approach Workshop5 Rights of people living with HIV: core values as basement of human rights: justice, respect, equality, autonomy, universality and participation. Stigma and discrimination. Stigma as a form of violence, symbolic and institutional violence. Power relationships in providing care. April 2018 Knowledge First Knowledge Fair: Care for and by people living faira with HIV. a Program knowledge fair (see Appendix S1). 4 | FEIJOO-­CID et al. the term expert HIV patients, following the term ‘experts by experi- to which the respondent believes that patients want information ence’, acknowledging the extensive work and knowledge involved in and should be part of the decision-­making process. The Caring living with and managing chronic disease (Towle et al., 2014). Since subscale—­also containing nine items—­reflects the extent to which we already had an expert patient, she oversaw the selection of new the respondent sees the patient's expectations, feelings and life cir- expert patients from among the women she had worked with for cumstances as crucial elements in the treatment process. The PPOS over 20 years. She chose another woman living with HIV willing to be was culturally adapted to the Spanish context but not validated. engaged in the teaching program. After over 20 years of working in The KAP questionnaire on HIV/AIDS consists of 52 questions, peer-­support groups, thus having gone over a long process of learn- including items related to attitudes towards people living with HIV ing about self-­care, both women were clear about the importance of (18 items), HIV knowledge (31 items) and practices (three items). putting their own experience at the service of future health profes- Responses included true/false, multiple-­choice and Likert scale op- sionals' training. The funds required to carry out the project, includ- tions. We grouped each KAP variable into subscales. Knowledge ing compensation for the participation of expert patients, came from comprised five subscales as follows: knowledge about reducing the a grant (see Funding). risk of HIV infection, HIV myths, knowledge about mother-­to-­child transmission, knowledge of antiretroviral treatment (ART) and with whom the diagnosis is shared. Attitudes also included the following 3.4 | Participants and sampling four subscales: confidentiality of diagnosis, attitudes towards people living with HIV, fear of contracting HIV and worries about secondary The study population included the 82 students enrolled in the stigma. Practices comprised one subscale: extra measures to care for Module of Nursing and Medical Anthropology taught during the people living with HIV, that is use of double disposable globes. KAP fourth year of the Bachelor's Degree in Nursing at the Universitat subscale variables were dichotomized using an a priori threshold. The Autònoma de Barcelona. Participation in the patient teaching activ- threshold for each KAP subscale was considered adequate when all ity was voluntary since students could opt-­in as an alternative to responses were correct, except in ‘knowledge about reducing the risk another assessable assignment. of HIV infection’, in which the threshold allowed one wrong answer. For the quantitative study, 33 subjects were necessary to recog- nize a difference of ≥0.3 units on the Patient-­Practitioner Orientation Scale (PPOS) as statistically significant. The standard deviation was 3.5.2 | Qualitative data collection assumed to be 0.5. A dropout rate of 10% was anticipated. The alpha risk accepted was 0.05, and the beta risk was 0.1 in a two-­sided test. Two focus groups were held after each workshop session to collect Finally, 35 people participated in the focus groups and completed qualitative data. All students participating in the workshops agreed to the questionnaires. The qualitative study sampling was intentional, participate in the evaluation groups following each session. We de- so the students who agreed to participate in the workshops were veloped a semi-­structured interview guide that covered the follow- invited to the learning experience assessment in focus groups after ing questions: (a) Can you explain what you have learned and what each workshop session. have you reflected on? (not just at the level of knowledge but also attitudes and practices) (b) Can you explain what have you learned or re-­learned? (c) Can you talk about your learning experience in this ses- 3.5 | Data collection sion? and (d) What would you change in your practice as a student nurse and future nurse? (Including attitudes, practices and care). In Data collection took place between February and June 2018. Both the last workshop, we also asked about expectations and suggestions quantitative and qualitative data were collected simultaneously. for improvement. Qualitative data collection lasted between 25 and 45 min and was audio-­recorded. Data saturation was established by ‘repeated responses’ across groups (Saunders et al., 2018). 3.5.1 | Quantitative data collection All participating students completed an anonymous, self-­reported 3.6 | Ethical considerations questionnaire before the first workshop and after the last. The questionnaire contained the PPOS, with permission granted (Krupat Ethics committee approval was obtained from the University. To et al., 2000), as well as the KAP questionnaire on HIV/AIDS, de- ensure that patients do not become overly anxious, we met before signed by IPPF International Planned Parenthood Federation (2008) the workshop to clearly explain the purpose of the study, the im- and validated in Spanish to assess HIV-­related knowledge, attitudes portance of their involvement and the possibility they could disen- and practices. gage at any moment. As consent and confidentiality might represent The PPOS offers a total score, ranging from patient-­centred to major concerns for patients (Towle et al., 2010), we fully explained physician-­centred care, plus two secondary scores (Sharing and that they could decide what medical information they would share Caring). The Sharing subscale, with nine items, reflects the extent with the students that were relevant for their learning, and we FEIJOO-­CID et al. | 5 provided students with guidelines about patient's confidentiality, of the paper with one participant for feedback. Constant reflection dignity and respect. encouraged us to consider our positionality and we also discussed our As for the students, the study was clearly explained, emphasizing findings with researchers who did not participate in the interviews or the importance of confidentiality aspect when dealing with the pa- the analysis, thus enhancing confirmability. We carried out an ongo- tients' personal experiences. Students were also informed that they ing review and provided a detailed description of how we collected, could withdraw at any time, with no need to offer explanations and analysed and interpreted the data, thus strengthening dependability. no academic consequences. Confidentiality, the anonymity of quan- Moreover, we were exhaustive in our data collection and provided a titative data and pseudonymity of the qualitative data were guar- thorough description of participants and the involvement of patients anteed. All nursing students gave written informed consent on the to allow comparison with other contexts. same day the study was explained. About the quantitative study, the sample size ensures cor- rect statistical power, and the data were obtained from valid and reliable questionnaires, which were adapted using a process of 3.7 | Data analysis translation and back-­t ranslation to ensure they were culturally adequate. 3.7.1 | Quantitative analysis Data obtained from the quantitative study were managed and ana- 4 | R E S U LT S lysed using SPSS version 20. The differences in KAP before and after intervention were analysed using McNemar's test. The differences 4.1 | Participant characteristics in PPOS were analysed using the Wilcoxon test. One student out of the 35 enrolled withdrew following the first workshop. All in all, 34 students provided the requested information 3.7.2 | Qualitative analysis both in the pre-­ and post-­intervention stages; 27 were female. Age ranged from 21 to 36 years old (median 22). The majority had no All qualitative data were managed using Atlas-­t i software and family members living with HIV and 82% had met a person with HIV analysed using qualitative content analysis. MF and RG read and in their nursing practice (see Table 2). re-­read the transcripts and notes. Then, MF coded the first two transcripts, which were discussed with the other author until a consensus was reached. The rest of the transcripts were coded 4.2 | Assessment of teaching intervention based on the shared criteria developed previously. For cases outcomes: Quantitative data that were unclear, we discussed how to apply the coding crite- ria. The data were refined and grouped hierarchically into themes 4.2.1 | Knowledge, attitudes and practice (Graneheim et al., 2017). The final analysis was discussed with the rest of the team (see Appendix S1). Table 3 summarizes the results from the KAP questionnaire. McNemar's test suggests a significant improvement in knowledge of risk factors of HIV transmission, knowledge about mother-­to-­child 3.7.3 | Integration of data transmission, knowledge of ART, attitudes about the confidentiality of diagnosis, fear of HIV, worries of secondary stigma and use of extra First, the qualitative and quantitative data were analysed separately and independently. Then, the findings of both methods were trian- TA B L E 2 Characteristics of student respondents gulated by the first, second and last authors during the interpretation Gender Women (n = 27) Men (n = 7) Total (n = 34) phase of the study. For this purpose, the quantitative and qualitative findings were brought together on the same page, and, after that, Age M (SD) 22.5 (3.1) 22.6 (2.9) 22.5 (3) convergences, discrepancies and complementarities were identified Study nursing as the first option 53% (O'Cathain et al., 2010). The gathering of all the information allowed Pass all subjects in last semester 100% the integration of the data using a narrative approach in the Discussion Career paid by parents or relative 50% section (Creswell & Plano Clark, 2017; Fetters et al., 2013). With steady partner 62% No experience as a healthcare professional 65% No relative or friend living with HIV 91% 3.8 | Validity and reliability No previous specific training in HIV 71% Know a person with HIV/AIDS 82% We followed Lincoln and Guba (1985) to ensure the rigour of our qualitative method. To reinforce credibility, we shared a working draft Abbreviations: M, mean; SD, standard deviation. 6 | FEIJOO-­CID et al. TA B L E 3 KAP initial results and pre-­and post-­intervention changes Positive KAP at the KAP pre–­post-­intervention positive McNemar (binomial beginning change/Total changes* test p-­value) Knowledges Risk factors of HIV transmission 21/34 (62%) 9/10 (90%) .021 Strategies to reduce HIV risk infection 19/34 (56%) 5/13 (38%) .581 Myths associated with HIV 14/34 (41%) 4/14 (26%) .180 Mother-­to-­child transmission 2/34 (6%) 19/19 (100%) <.001 Antiretroviral treatment (ART) 9/34 (27%) 18/21 (86%) .001 Whom to communicate the diagnosis to 0/34 (0%) —­ —­ Attitudes Confidentiality of diagnostic 13/34 (38%) 12/15 (80%) .035 Contact with people living with HIV 12/34 (35%) 9/11 (82%) .065 Fear of contracting HIV 2/34 (6%) 14/14 (100%) .001 Secondary stigma 7/34 (21%) 16/17 (94%) <.001 Practices Extra measures to care people living with HIV 11/34 (32%) 17/17 (100%) <.001 Note: Total changes* = Total number of changes between pre and post in each criterion. preventive measures. However, no statistically significant differences And the issue of not asking […] I see it as, perhaps, the were found in strategies to reduce HIV risk infection, myths about HIV, fear of becoming human […] That's what it's about, attitudes towards people living with HIV and to whom the diagnosis breaking the barrier that we have within the health- should be communicated (they failed in communicating the diagnosis care system: it is about doing, doing, doing; and so in to the Ministry of Health since HIV is a disease that must be reported). order to avoid “wasting” five minutes, we do not ask; pausing and taking some weight off something [asking and listening] can do as much good as medication, or a 4.2.2 | Orientation of care procedure or… (man, focus group 5). Table 4 shows the PPOS scores (mean, standard deviation and median). Engagement in self-­examination of one's attitudes. In this Wilcoxon's signed-­rank test indicates a statistically significant increase transformation, students engaged in self-­examination of their in the preference for more patient-­centredness after the intervention. attitudes. They saw changes in themselves related to HIV stigma and The most significant change was in Sharing, with five statistically differ- the fear of contracting the virus, both having been reinforced in their ent items, compared with only one in the Caring subscale (see Table 5). clinical practice. A discourse of commitment to non-­discrimination emerged. The impact of the teaching intervention from the students' perspective: qualitative data […] and in the end, we [healthcare professionals] stig- From the students' perspective, the learning experience is mainly based matize the most. Well, changing that in ourselves as on transformative learning and rebuilding the humanization of HIV care. healthcare providers, looking at ourselves and seeing what we are doing (woman, workshop 2). Transforming attitudes and one's practice. Students believed the workshops transformed their attitudes towards and practice involving The importance of the humanization of HIV care. In the analysis, a need people living with HIV in two main ways: critical reflection on one's to reconstruct the humanization of the care of people living with own practice and engaging in self-­examination of one's attitudes. HIV comes up as a relevant issue and is reflected in two main ways: putting a human face on the disease and being aware of the suffering Critical reflection on one's practice. Students criticized the associated with living with HIV. paternalistic model in which they were educated and reproduced as trainees. They identified the need to become more human as I had never met [someone living with HIV] before and professionals and develop the art of asking and listening to patients' in order to make it more real […], putting a human face real concerns. They criticized the fact that there is no time dedicated on the disease helps change one's idea about it (man, to establishing a deeper relationship with patients. focus group 5). FEIJOO-­CID et al. | 7 TA B L E 4 Patient-­centred scores and Pre-­intervention Post-­intervention pre-­and post-­intervention changes (n = 34) M (SD) Mdn (IQR) M (SD) Mdn (IQR) Za p-­value Sharing 4.19 (0.54) 4.33 (0.69) 4.69 (0.58) 4.78 (0.92) −3.89 <.001 Caring 4.77 (0.41) 4.89 (0.69) 4.97 (0.58) 5.06 (0.94) −2.47 .014 PPOS 4.48 (0.41) 4.58 (0.49) 4.83 (0.53) 4.92 (0.83) −3.60 <.001 Abbreviations: IQR, interquartile range; M, mean; Mdn, median; SD, standard deviation. a Wilcoxon Signed Ranks. Students identified three main issues in this reconstruction: people hide their status from family members or health professionals emotions as core to caring, embodying empathy and listening and led to an exciting debate about ethics, morals and legal aspects of shar- trust-­building. ing HIV serostatus or not. Emotions as core to caring. Students consider emotions a priority in Listening and trust-­building. Students rediscovered the essential role the humanization of care even though that was not their behaviour of listening and they considered it a critical skill for humanization. during clinical practice. Before attending the workshops, they were unaware of the importance of listening when accompanying people, its real impact I believe that caring means understanding that, well on people or its effectiveness. The art of asking and listening became providing the type of care based on listening, i.e. emo- one of the pillars of humanization. They realized that listening tional care, not just the capacity to give shots or know enhances empathy and contributes to building a trustful relationship about different diseases (woman; focus group 4). with the patient. They described certain life circumstances, such as receiving an HIV I think that one of the reasons why we are not aware, diagnosis or being discriminated against, as crucial scenarios for nurses or maybe why we do not put so much effort [into lis- to provide emotional care. Emotion is critical when accompanying a tening] is because we are not very aware of the risk in- newly diagnosed person. They acknowledged the importance of work- volved in not doing so [listening]. If I get a shot wrong, ing with their emotions as professionals. Occasionally, they do not ex- then there is the risk of infection, or so (woman, focus plore patients' emotions because they do not know/have the tools to group 3). face their own. They realized that they had not been trained to manage their emotions in the act of caring. 5 | DISCUSSION Because I felt very bad [about the suffering of one person living with HIV], but I did not know what to do, This study aimed to introduce educational intervention in which I just took her hand and said “everything will be OK”; people living with HIV act as teachers in a university nursing de- now I understand what the patient needed and felt at gree. Patients were involved in the design, teaching and evaluation that moment and now [after the workshops] I know of this initiative, making it one of the few efforts to date to conduct what to do (woman; focus group 5). an experimental assessment of the repercussions of actively involv- ing patients in student nurse training. Our findings suggest that the Empathy. Empathy has been discussed over the course of their engagement of expert HIV patients as teachers is a transformative studies and they thought they understood its meaning. After the learning experience that addresses stigma and promotes patient-­ readings and discussions with HIV educators, they became fully centred care. aware of the real meaning of this concept. Firstly, this study is unique because the influence of patient-­ teachers in patient-­centred care, and HIV-­related knowledge, atti- If I learned something from MariJo it is that empathy tudes and practices in students were assessed using qualitative and is not what we were told in class, something like “to quantitative data. Since experimental studies assessing the impact put oneself in another person's shoes” or something of patient involvement in university teaching are scarce, we compare like that; if I am asked what empathy is, what I learned our results with the existing literature assessing patients as teach- from her is that it is about listening (woman, focus ers or other interventions engaging patients in any other healthcare group 2). field. We offer explanations of the findings from both quantitative and qualitative data. From the workshops, they understood what it means for a person Secondly, evidence shows that when HIV education is pro- living with HIV to share or hide their diagnosis. Understanding why vided to nursing students, they overcome their negative attitudes 8 | FEIJOO-­CID et al. TA B L E 5 Patient-­centred items and pre-­and post-­intervention changes (n = 34) Pre-­intervention Post-­intervention M (SD) Mdn (IQR) M (SD) Mdn (IQR) Za p-­value Sharing The health professional is the one who should 4.47 (0.93) 4.0 (1) 5.21 (1.09) 6.0 (2) −2.94 .003 decide what gets talked about during a visit. It is often best for patients if they do not have a 4.79 (1.34) 5.0 (2) 5.09 (1.06) 5.0 (2) −0.86 .388 full explanation of their medical condition. Patients should rely on their health 4.38 (1.30) 4.0 (1) 4.94 (1.10) 5.0 (2) −2.30 .021 professionals' knowledge and not try to find out about their conditions on their own Many patients continue asking questions even 4.12 (1.37) 4.0 (1) 4.88 (1.04) 5.0 (2) −3.00 .003 though they are not learning anything new. Patients should be treated as if they were 4.32 (1.72) 5.0 (3) 5.65 (0.69) 6.0 (0) −3.88 <.001 partners with the health professional, equal in power and status. Patients generally want reassurance rather than 3.18 (1.59) 3.0 (3) 3.41 (1.40) 4.0 (2) −0.98 .327 information about their health. When patients disagree with their health 3.82 (1.14) 4.0 (1) 3.62 (1.71) 4.0 (3) −0.66 .512 professional, this is a sign that the professional does not have the patient's respect and trust. The patient must always be aware that the 5.74 (0.71) 6.0 (0) 5.85 (0.50) 6.0 (0) −1.41 .157 health professional is in charge. When patients look up medical information on 2.91 (1.11) 3.0 (2) 3.53 (1.28) 4.0 (2) −2.75 .006 their own, this usually confuses more than it helps. Caring Although healthcare is less personal these 4.74 (1.11) 4.5 (2) 4.88 (1.37) 5.0 (2) −0.73 .463 days, this is a small price to pay for medical advances. The most important part of the standard visit is 4.76 (1.07) 4.5 (2) 5.12 (1.07) 6.0 (2) −1.43 .153 the physical exam. When health professionals ask a lot of questions 4.74 (0.99) 5.0 (1) 4.76 (0.78) 5.0 (1) −0.09 .933 about a patient's background, they are prying too much into personal matters. If health professionals are truly good at diagnosis 5.35 (1.07) 6.0 (1.25) 5.35 (1.23) 6.0 (1) −0.32 .748 and treatment, the way they relate to patients is not that important. If a health professional's primary tools are being 5.44 (0.89) 6.0 (1) 5.38 (1.10) 6.0 (1) −0.21 .834 open and warm, the health professional will not have a lot of success. A treatment plan cannot succeed if it is in 4.97 (1.19) 5.0 (2) 5.48 (0.76) 6.0 (1) −2.22 .027 conflict with the patient's lifestyle or values. Most patients want to get in and out of the 3.85 (1.37) 4.0 (2) 4.26 (1.33) 4.0 (1.25) −1.82 .069 health professional's office as quickly as possible. It is not that important to know a patient's 5.53 (0.86) 6.0 (1) 5.71 (0.94) 6.0 (0) −1.23 .217 culture and background to treat the person's illness. Humour is a major ingredient in the health 3.56 (1.16) 4.0 (2) 3.76 (1.21) 4.0 (2) −1.04 .300 professional's treatment of the patient. Abbreviations: IQR, interquartile range; M, mean; Mdn, median; SD, standard deviation. a Wilcoxon Signed Ranks. FEIJOO-­CID et al. | 9 (Pickles et al., 2009). Moreover, when this training is conducted by Additionally, fourth-­year Spanish students spend more than 2000 h people living with HIV, it helps personalize the experience of living at mandatory internships in a clinical setting not particularly accept- with HIV and educate and destigmatize the disease (Frain, 2017). ing of patient-­centred care, its primary focus being on procedures The intervention we propose in this study goes beyond testimoni- and task performance (Rosewilliam et al., 2019). als: expert HIV patients discuss the knowledge they shared in the Fourthly, the qualitative analysis of the mixed design, through classroom with students via Moodle. A recent systematic review the category ‘The importance of the humanization of HIV care’, showed that contact interventions between nurses and patients shows the importance of students according to caring. Qualitative have been carried out in other contexts (Feyissa et al., 2018, 2019), and quantitative results are congruent with care being the basis showing a significant reduction in HIV-­related stigma. This reduction of the nursing curriculum and practice. In the quantitative data, is higher when combined with education about HIV. Contact inter- students started with a high score (4.75) in Caring, and just one ventions have proved effective in reducing stigma in other environ- variable—­'Treatment cannot succeed when it is in conflict with pa- ments such as mental health or disability (Spencer et al., 2011), and tient's lifestyle or values’—­showed a significant change. This vari- the need for experimental and longitudinal studies has been sug- able focuses on the instrumental caring behaviour, specifically on gested. The repeated measurements taken in this study address this what nurses do in therapeutic procedures (Austgard, 2008), while need in some ways. The quantitative results—­improved attitudes—­ the qualitative data—­‘The importance of the humanization of HIV reinforced by qualitative data—­engagement in self-­examination of care’—­matches the expressive dimension of caring in which compas- one's attitudes—­show improvement in the ability of future nurses sion, trust and communication play a crucial role (Austgard, 2008). to be critical of their practice and attitudes. Thus, patient involve- In caring theories, the emotional dimension of caring is a relevant ment enhances critical, reflective thinking (Feijoo-­Cid et al., 2017; element (Austgard, 2008; Dobrowolska & Palese, 2016). Several au- LeBlanc, 2017). Reflection has previously been connected with thors advocate the need to consider emotional dimensions in the transformative learning in student nurses in clinical practice at men- nursing curriculum rather than focusing solely on knowledge and tal health services (Rush, 2008). Transformative learning is the pro- skills (Brown et al., 2011), and nursing students appreciate expres- cess by which students' outlooks are transformed, enabling them to sive rather than instrumental caring (Dobrowolska & Palese, 2016). become more open, emotionally receptive to change and reflective Finally, the mixed data also show that sharing was the dimen- so that they can generate more genuine or more reasonable beliefs sion with the most significant changes, while no related qualita- and opinions to guide action (Mezirow, in Rush, 2008). Rush (2008) tive results were observed. The starting score for Sharing was high highlights the importance of the learning context: in the classroom, (4.19), given that both healthcare education—­an integral aspect of the student learns from the patient; in clinical placements, students patient-­centred care (Forbes & Mandrusiak, 2020)—­and the com- learn about the patient. In the classroom, students begin to acknowl- munication process are addressed in the degree (UAB, 2019). Basic edge people living with HIV as ordinary people who are ‘just like communication skills, such as information exchange tailored to the them’, while in clinical placements patients become ‘the other’, guilty patient's preferences and values (Forbes & Mandrusiak, 2020), of being infected and the object of the fear of contracting HIV. are promoted as an essential part of Sharing. The PPOS defines Thirdly, our findings show that workshops led by people living Sharing as the extent to which the respondent believes that pa- with HIV can potentially shift students' orientation towards the care tients want information and should be part of the decision-­making model to a patient-­centred one. Previous studies have noted that pa- process. Despite the initial high score resulting from the previous tient engagement allows students to capture the essence of person-­ curricular training, the items that showed the most remarkable centred care as opposed to professionally focused care because change after the workshops were related to ‘Self-­management the interaction with ‘real’ patients offers an opportunity to look at of health’ and ‘Justice, respect and equality’, issues addressed in problems from the patient's perspective not available elsewhere workshops 2 and 5, respectively. These aspects are associated (Scammell et al., 2016). Our after-­workshop results are comparable with decision-­making and are consistent with the fact that nei- to those found in Portuguese nursing students (PPOS mean = 4.96; ther the curriculum of the education centre nor the clinical setting Sharing mean = 4.94 and Caring mean = 4.98) (Grilo et al., 2014) but place value on shared decision-­making. The absence of qualita- higher than those found in the English context (PPOS mean = 3.90; tive results related to sharing suggests that (a) change is still un- Sharing mean = 4.14 and Caring mean = 3.65) (Rosewilliam conscious—­it is not expressed if not specifically asked about—­(b) et al., 2019). The mean of our fourth-­year students before the work- students have little experience in the practice of shared decision-­ shops was like first-­year Portuguese students (PPOS mean = 4.31), making and the patient's right to information. We should remem- but identical to Portuguese nurses (PPOS mean = 4.48). This can all ber that the traditional prevalence of the biomedical model, which be explained by differences in the school curriculum and mentoring is still mainstream in Spanish clinical practice (Feijoo-­C id, 2013; in the mandatory internship. In Portugal, the school curriculum en- Feijoo-­C id et al., 2017) does not promote patient involvement. compasses social sciences with an increased focus on patients' ex- The socialization of nursing students in those spaces, especially in perience of illness and on communication skills (Grilo et al., 2014), later stages of their training, when care is more hands-­on, might while in Spain, it does not focus specifically on illness experiences, have adverse effects, such as the progressive desensitization to and social sciences are included to a limited extent (UAB, 2019). human needs or less empathetic (Neumann et al., 2011; Traynor 10 | FEIJOO-­CID et al. & Buus, 2016) or compassionate (Sinclair et al., 2016) behaviours. the actors involved in university policies accept them and commit It is difficult for nursing students to focus on shared decision-­ to both promoting and funding them. For patients to be involved making processes when most of their clinical training occurs in in these activities, they must meet certain criteria that must be this biomedical model. reported in the evaluations published on these educational strate- gies, as was the case in this study. The quality of the involvement of the patient-­expert concept proposed here would benefit from 5.1 | Limitations including patients as regular collaborators in a content-­integrated way with support from teachers. Future studies allowing the addi- To our knowledge, this is the first study assessing pre-­/post-­ tion of equivalent control groups and randomization could reinforce intervention change using quantitative and qualitative methods the findings of this research. In this vein, longitudinal studies would to explore the orientation of care in nursing students in Spain. verify the impact of the intervention of patients as teachers on the However, we must also acknowledge some limitations. First, the quality of nursing care. lack of a control group does not allow us to ensure that changes are solely a result of the intervention, as the Hawthorne effect or AU T H O R C O N T R I B U T I O N S the regression towards the mean cannot be ruled out when meas- All authors have agreed on the final version and meet at least one of uring the same variable a second time. However, the creation of a the following criteria (recommended by the ICMJE): (1) substantial control group and the randomization of participants was not ethi- contributions to conception and design, acquisition of data or analy- cally acceptable in the context of the study since it would mean sis and interpretation of data; (2) drafting the article or revising it that a group of students would not benefit from an enriching inter- critically for important intellectual content. vention. Second, we stand by one of the limitations identified by previous evidence: it is a single-­institution study with a small sam- AC K N OW L E D G E M E N T S ple (Scammell et al., 2016). However, according to the calculations We acknowledge Maria José Vázquez Naveira for her reviewing, made, the sample is big enough and it has been implemented in a editing and insightful comments on the manuscript. We also want different environment from that of the UK, thus offering contex- to thank both her and the other expert patient for their contribu- tual variability to existing evidence. Third, the PPOS was culturally tion and participation in the project. Our thanks also go to the stu- adapted to the Spanish context but was not validated. We use the dents for their generous and active engagement with their study. term health professional instead of nurse and this could initially We highly appreciate the support of the Generalitat de Catalunya look like a limitation given that the study group might not feel Research Group, GRUP DE RECERCA I INNOVACIÓ EN DISSENYS directly concerned. On the other hand, it may have allowed the (GRID) for the technology and digital multimedia application to ob- students to answer the questionnaire placing the patient at the servational designs (grant no. 2017 SGR 1405). centre, rather than the healthcare professional. Fourth, the lack of literature on assessing patient involvement in nursing teach- F U N D I N G I N FO R M AT I O N ing using experimental designs was a challenge, not allowing us to This study was supported by a Community Grant ‘Cuidados de, por compare the results with similar experiences. y para las personas que viven con VIH. personas que viven con VIH como docentes en la formación de estudiantes de enfermería’ from Gilead Sciences, S.L., Spain, in 2017 Community Grants & Donations 6 | CO N C LU S I O N S Program. This study contributes to reducing the shortage of mixed data on C O N FL I C T O F I N T E R E S T evaluating patient engagement in nursing education. An interven- No conflict of interest has been declared by the author(s). tion based on workshops facilitated by expert HIV patients is a transformative learning experience that shows excellent potential to PEER REVIEW improve HIV-­related stigma and foster patient-­centred orientation. The peer review history for this article is available at https://publo​ Nonetheless, it is important to note how students rediscover the ns.com/publo​n/10.1111/jan.15364. emotional dimension of Caring (the importance of the humanization of HIV care); reinforce one basic instrumental guideline in all nursing DATA AVA I L A B I L I T Y S TAT E M E N T curricula by systematically adapting the treatment to the patient's Data available on request due to privacy/ethical restrictions lifestyle; rediscover the patient's right to information, and visualize the need to engage patients in decision-­making. ORCID In light of these findings, patient engagement should be con- Maria Feijoo-­Cid https://orcid.org/0000-0002-7010-373X sidered a worthwhile educational strategy to bring to the class- Rosa García-­Sierra https://orcid.org/0000-0001-9220-610X room. Participatory design and evaluation dynamics, such as those Maria Isabel Fernández-­Cano https://orcid. proposed here, are complex and will only be sustainable when all org/0000-0002-4267-2345 FEIJOO-­CID et al. | 11 Grilo, A. M., Santos, M. C., Rita, J. S., & Gomes, A. I. (2014). Assessment REFERENCES of nursing students and nurses' orientation towards patient-­ Austgard, K. I. (2008). What characterises nursing care? A hermeneutical centeredness. Nurse Education Today, 34(1), 35–­39. https://doi. philosophical inquiry. Scandinavian Journal of Caring Sciences, 22(2), org/10.1016/j.nedt.2013.02.022 314–­319. https://doi.org/10.1111/j.1471-­6712.2007.00526.x Hesse-­Biber, S. (2015). Introduction: Navigating a turbulent research Bleakley, A., & Bligh, J. (2008). Students learning from patients: Let's get landscape: Working the boundaries, tensions, diversity, and con- real in medical education. Advances in Health Sciences Education: tradictions of multimethod and mixed methods inquiry. 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(2022). Transformative learning experience among Towle, A., & Godolphin, W. (2015). Patients as teachers: Promoting their nursing students with patients acting as teachers: Mixed authentic and autonomous voices. Clinical Teacher, 12(3), 149–­154. methods, non-­randomized, single-­arm study. Journal of https://doi.org/10.1111/tct.12400 Advanced Nursing, 00, 1–13. https://doi.org/10.1111/ Traynor, M., & Buus, N. (2016). Professional identity in nursing: UKstudents' explanations for poor standards of care. Social Science and Medicine, jan.15364 166, 186–­194. https://doi.org/10.1016/j.socsc​imed.2016.08.024 FEIJOO-­CID et al. | 13 The Journal of Advanced Nursing (JAN) is an international, peer-reviewed, scientific journal. JAN contributes to the advancement of evidence-based nursing, midwifery and health care by disseminating high quality research and scholarship of contemporary relevance and with potential to ­advance knowledge for practice, education, management or policy. 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