Introduction

Serious illness conversations represent a wide range of discussions engaging healthcare professionals, patients and/or their informal caregivers when a health condition with a high risk of mortality and a negative impact on quality of life occurs or excessively strains the caregivers [1]. Serious illness conversations need a complex skillset that has been conceptualized as both a skill and as a way of being in relation to the other [2]. Indeed, such conversations occur in a context of uncertainty and turbulent emotions, and involve communication skills as well as relational skills of empathy, flexibility, and self-reflection [3]. According to their goal, serious illness conversations require competencies in delivering news, eliciting hopes and worries, sharing or clarifying the prognosis, promoting illness understanding, exploring what is important for the patient and their goals and wishes for care, making recommendations, but also in responding to emotions and offering support and reassurance [4, 5].

Although there is consensus that effective communication plays a key role in the establishment of therapeutic alliance and partnership based on mutual trust [6] and contributes to know the patients’ valued priorities and align care with their preferences [7], communication skills training is generally not part of traditional education for healthcare professionals in Italy, especially for clinicians. As a consequence, the novices who enter the profession often feel underprepared and unequipped for difficult conversations [8], and tend to postpone them as much as possible [9]. However, there is increasing awareness that communication skills are both innate and teachable [6, 10] and communication skills training is a growing component of formal professional training for healthcare professionals in other healthcare systems such as the UK, US, Canada and Australia, where programs to promote high quality communication have been introduced in the education of healthcare students and also represent a consolidated component of continuing education for professionals [11–14].

Several institutions are recognizing the worthy contribution of effective communication in avoiding aggressive, non-beneficial treatments and delivering high-quality care [15], with increasing investments in communication skills training [16, 17]. At least at a basic level, all members of the team should be confident and capable of engaging in serious illness conversations [18].

Experts in the field of communication skills recognize that didactic material can support experiential learning [10]. Printed educational resources are among the most common approaches to translate research into clinical practice tips [19]. They may facilitate clearer communication by providing a mental model of common clinical scenarios (i.e., context, goals, challenges to overcome, strategies to be used, etc.) [6, 18]. A written conversation guide offers structure for the conversation and facilitates timely, effective conversations [17, 20], while maintaining an active role of professionals [4]. Compared to other formats such as video or audio guides, written guides are more quickly accessible in clinical contexts, make it easier to revisit a particular section, and their computerized version allows one to search for keywords that make them more discoverable [19]. When conversation guides were used, professionals perceived that they had a framework for difficult conversations [17] and their satisfaction with their role increased [20].

Written conversation guides have been introduced in different clinical contexts, such as emergency departments, intensive care units, primary care, oncology, and long-term care to provide high-quality patient-centered care [12, 21, 22]. In these experiences, the original conversation guides were adapted to the care environment and the scope of practice of the healthcare professionals who would use the guide [23].

Conversation guides that are consistent with task-centered instructional strategies may be particularly helpful to improve the flow and speed of conversation [17]. The education theory of task-centered instructional strategies assumes that optimal learning occurs with focused tasks that learners are likely to encounter in their daily practice, associated with readily accessible procedural information [24]. The former makes it clear what the learner should do, while the latter provides the learner with the information they need to perform the task and decreases their cognitive load [24].

Although it is acknowledged that there is no “magic bullet” to change professional practice [25] and that the context influences the effectiveness of strategies [26], twelve key theoretical constructs have been identified to explain healthcare professionals’ behavior change [27]. In order to promote behavior change, interventions should enhance (1) knowledge and (2) skills, (3) be consistent with social/professional role and identity, (4) serve as persuasive strategies which influence beliefs about capabilities and (5) lead to changes in beliefs about consequences, (6) stimulate reflection on motivation and goals, (7) influence memory, attention, and decision processes, (8) create a facilitative environmental context that triggers behaviors, evoke (9) emotions and (10) behaviours while providing regulation, and (11) propose desirable behaviours and (12) social norms.

In the effort to maximize the benefit of an innovative communication skills training program for different health and social care professionals [28], as an integral part of the intervention, we developed an educational booklet aimed at providing professionals with guidance in challenging communication scenarios with frail or terminally-ill patients and/or their families. Unlike previous conversation guides [29, 30] that provide a talking map with a series of signposts to cover the conversation flow with no reference to clinical cases, this booklet is built on complex communication scenarios (e.g., unawareness of disease trajectory or prognosis, ambivalent care preferences) based on realistic cases. This is likely to improve learners’ memory of content because they immediately perceive support for real-case scenarios. Moreover, previous guides employ only one communication strategy; instead, having more solutions could maximize the chance for learners to find the communication strategy that best fits their learning style (e.g., short tips, infographics, or illustrative statements). Therefore, the booklet adopts several communication strategies and covers the most common and challenging communication scenarios that professionals can experience in clinical practice to help them acquire knowledge of their real-word tasks and form mental models for how integrating the skills into their performance. In fact, relevance is a pivotal component of motivation for behavioural change [31].

The primary aim of this study was to describe the development and validation of the educational booklet. The secondary aim was to assess its acceptability, usefulness, and feasibility to use in daily practice and the acquired knowledge on communication techniques perceived by professionals.

Material and methods

This study was carried out according to a three-step approach [32] and adhered to the guidelines outlined in the Standards for QUality Improvement Reporting Excellence in EDUcation (SQUIRE-EDU) [33] (S1 Table).

The methodology included the creation of the resource, validation, and evaluation. The first step entailed a literature review, qualitative interviews, and a co-creation process to develop the booklet. The second step involved the booklet’s validation (i.e., relevance) through health and social care professionals; moreover, completeness, clarity, realism of clinical scenarios, readability, and design were assessed. The third step concerned the preliminary evaluation of the booklet by health and social care professionals working in different clinical settings. The professionals rated the acceptability, usefulness, and feasibility of using the booklet in daily practice as well as their acquired knowledge on communication techniques and protocols after reading the booklet. These steps ensured the methodological validity and reproducibility of this study (Fig 1).

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Fig 1. Development, validation, and preliminary evaluation of the educational booklet: A three-step approach.

BALD, Baker Able Leaflet Design; CVI, Content Validity Index.

https://doi.org/10.1371/journal.pone.0304180.g001

Participants involved in the development of the booklet provided verbal consent that was audio and video recorded, while those involved in the validation and preliminarily evaluation steps provided written consent. The study was approved by the Ethics Committee of the University of Torino (n. 0598416/2021).

Results

First step: Development of the booklet

The inductive thematic analysis of focus group transcripts identified eight areas for improvement: 1) Make clearer that the booklet is part of a communication skills training program; 2) Strengthen the relational component of communication; 3) Enhance the realism of clinical scenarios; 4) Draw attention to the legal issues; 5) Insert missing critical situations; 6) Employ a person-centered dialogical approach; 7) Enhance actionability; and 8) Improve graphics.

Further refinements came after re-evaluation by focus group participants and external reviewers, but without major changes.

Table 1 shows the main adjustments of the booklet during its development.

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Table 1. Adjustments of the booklet during the process of development.

https://doi.org/10.1371/journal.pone.0304180.t001

The final version of the booklet is freely available online and is downloadable from the website of the Italian Society of Palliative Care at https://www.sicp.it/aggiornamento/linee-guida-bp-procedures/2023/09/guida-alla-comunicazione-in-situazioni-complesse/

Third step: Preliminary evaluation

Participants.

Twenty-two professionals were contacted and all answered the evaluation questionnaire. The majority were females and the over 35 to under 35 years ratio was roughly equal. More than two thirds (n = 15) had more than 10 years of working experience with only three professionals with less than one year in the current service. Most were nurses, however, the profiles of physician, social worker, occupational therapist, and physiotherapist were also represented. The professionals worked in varying settings of care, including emergency, nursing home, medicine, surgery, primary care, and hospice. Only three professionals undertook specific education in clinical communication or counselling (Table 2).

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Table 2. Characteristics of professionals evaluating the educational booklet (n = 22).

https://doi.org/10.1371/journal.pone.0304180.t002

Questionnaire.

The evaluations for acceptability, usefulness, feasibility to use, and perceived acquired knowledge are presented in Table 3. In all, 18 (81.8%), 19 (86.4%) and 17 (77.3%) professionals deemed the booklet acceptable, moderate to highly useful, and moderate to highly feasible to use, respectively. Over 80% (n = 18) of the professionals perceived gain in knowledge after reading the booklet.

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Table 3. Acceptability, usefulness, feasibility to use and perceived acquired knowledge.

https://doi.org/10.1371/journal.pone.0304180.t003

Table 4 shows the acceptability score at the item level: particularly, professionals perceived the booklet as consistent with their professional identity and standard by agreeing that it aligns with the way they think things should be done (15/22) and complements their usual approach to communication (14/22). All but three professionals perceived a high probability that using this booklet may result in more benefit than harm, and half believed that the booklet would improve communication and relationships between professionals and families. Around 60% (13/22) reported that they would continue to use the resource after the end of the project.

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Table 4. Acceptability of the booklet: Scoring at the item level by the 22 evaluating professionals.

https://doi.org/10.1371/journal.pone.0304180.t004

All professionals would recommend the booklet to colleagues and 11 reported reasons: “provides practical and easily applicable advice” (n = 6), “provides a mental model and guidance in real-case scenarios” (n = 3), “helps start conversations” (n = 1), and “promotes reflection on professional competence and learning needs” (n = 1). Only one professional suggested enriching the bibliography to improve scientific soundness.

Discussion

This study describes the development, validation, and preliminarily evaluation of an educational booklet aimed at supporting Italian professionals in serious illness conversations. The co-creation process led to an acceptable resource with valid content, high degree of perceived usefulness, feasibility to use, and acquired knowledge.

The co-creation process for developing the booklet relied on focus groups involving a purposive sample of stakeholders. Focus groups represent a person-centered research method that provides the opportunity to discuss own perspective in a collaborative, participatory setting and could be helpful in obtaining viewpoints that are representative of the majority [46]. To develop the educational booklet, the academics strictly worked with stakeholders from other sectors, including professionals with varying scope of practice, representatives of volunteering associations, and associations of patients and family carers with life-limiting illnesses. The iterative, user-centric approach with several rounds of revisions promoted the creation of a person-centered resource tailored on day-to-day practice challenges that is responsive to real life scenarios [35]. For example, in Carlo’s case to promote reflection on care choices, the original, professionals-centric sentence “we have given you a lot of information” was changed into the person-centric statement “you have received a lot of information”. Moreover, the user-centric approach allowed to improve realism by replacing didactic sentences with real-life expressions. Although several communication protocols suggest closing the encounter by making patients/family carers summarize the main key points discussed, all participants in our focus groups agreed that this is usually performed by the professionals to avoid further pressure. Therefore, the original sentence “could you try repeating [‥]” was changed into “we would like to summarize […]”.

As suggested by previous literature on participatory research [47, 48], the co-creation process ensured that the booklet was relevant to the users’ priorities and needs and resulted in all professionals recommending the resource to colleagues for its practicality and support in real-case scenarios. The involvement of meaningful stakeholders in quality improvement initiatives is recommended to develop innovative clinical resources aimed at improving practice [49, 50]. An active engagement of potential users in the design of the resources can affect their behavior change more positively, favour the integration of resources in daily practice and is finally more likely to improve health-related outcomes and public health [51].

The I-CVI always above 0.9 and the S-CVI/Ave of 0.97 indicate the high degree of content information validity. The target of a S-CVI/UA above 0.80 was not reached [38]; this was somewhat expected due to the large number of external validators. However, the involvement of 15 external validators despite the fact that more than ten are probably unnecessary [52] was justified by the need to include professionals with different scope of practice who work in a wide array of clinical settings. This approach wants to sustain the core message that serious illness conversations are ubiquitous across several care settings and require a multidisciplinary team [53–55]. Additionally, only two experts deemed some sections not relevant (one 6/17 and one 2/17) (S5 Table).

The booklet performed well in the product testing of readability and design that employed internationally accepted methods -Gulpease index and BALD criteria, respectively-. In general, an increase in readability leads to a shorter reading time, better memory of the content, and greater text comprehension [56]. Our booklet showed good readability (Gulpease index of 60), was perceived easy to read by over 80% (18/22) of the professionals and 15 (68%) agreed on high understandability. Gray and Leary identified four basic elements that influence the ease of reading: content, style, structure, and design [57]. Design should not be overlooked since sound design principles can help users to understand and use information [58, 59]. Consultation workshops arranged for the development of a resource to support person-centered conversations strongly recommend avoiding an arbitrary design that would reduce the usefulness and uptake among professionals [60]. Multiple adjustments were made to the design and layout of the booklet and a design agency was engaged to improve the production of quick-reading and visual-friendly solutions.

An ever-present barrier to serious illness conversations is the lack of time [34, 54, 61, 62] and professionals need to quickly identify information that answers specific communication challenges. A resource designed to support clinical practice must address this obstacle. In our booklet, each communication scenario is accompanied by practical hints, an infographic, and an example of good interaction. This reflects a time-based approach on conversations templates of 1, 2, and 5 minutes, respectively, according to the amount of time professionals have.

Most professionals perceived the booklet as useful (19/22) and gain in knowledge on how engaging in serious illness conversations (18/22), despite the generally long working experience. This suggests that though experience may be a valid aid in sustaining challenging conversations, it is not enough. An international study involving professionals who work in long-term settings across six European countries found that Italy scored the worst in self-efficacy regarding end-of-life communication [63]. These conversations are emotional and professionals need training and resources to acquire confidence; our booklet is the first resource in Italian language that offers professionals support.

The booklet strives for behaviour change and supports professionals overcoming individual-related barriers and timely initiating these conversations. Our resource is well-placed to promote changes in professional practice as suggested by addressing all the 12 domains identified to explain behavior change [27]. The booklet enhances knowledge to engage successfully in serious illness conversations, provides guidance for real-life difficult communication scenarios while ensuring readability and appealing design the positively influence the memory of the content, is consistent with professional identity and standard, and influences beliefs about capabilities and outcomes with most professionals reporting they would continue to use the resource and perceiving benefits in communication and relationships with families. Additionally, the booklet may stimulate reflection on professional competence and learning needs, enhance sensitivity on the topic of quality and timely communication, which triggers change in behavior, evoke emotions and behaviors related to previous communication experience while providing functional tools for their management, and propose desirable behaviors or instigate a process of social influence.

The booklet supports professionals to sustain serious illness conversations that mirror their most frequent challenges in daily practice and for each scenario offers 1-minute, 2-minute and 5-minute solutions. Communication scenarios are relevant to the professionals’ learning needs and priorities to prompt efforts in memorizing information and applying learning that is perceived relevant. Moreover, the opportunity to choose the template that best fits own routine increases the use of the booklet. The easily readable information and the user-friendly design promote the understandability of the booklet content. This helps professionals become more knowledgeable about how engaging in serious illness conversations and supports behavior change to improve practice and patient care [19]. The resource stimulates reflection on professional competence, learning needs, and motivation to enhance skills with reference to the professional standard. The high content information validity while employing communication scenarios set in multiple care settings (i.e., nursing home, oncology, and intensive care unit), as well as the involvement of professionals with different scope of practice and who work in different contexts across the development, validation, and evaluation of the booklet, suggests that the resource may be potentially useful irrespective of the professional profile and the setting of care. Finally, the collaboration between researchers, professionals, and lay stakeholders and the testing of the booklet using validated tools ensured the development of a resource of increased quality and utility.

The booklet presents a limited number of advanced chronic or terminal illnesses, but addresses the most frequent communication scenarios across different clinical settings and offers practical tips and examples of communication protocols that can be tailored to different chronic conditions. Moreover, issues related to communication with adults about an infant or child’s illness are not addressed. Parents are often scared, feel guilty, and may have difficulties retaining and processing information. When communicating to parents, professionals have to listen authentically, avoid judgement and act empathically to capture their history, values, perspectives and peculiarities that make one family different from another. Parents need to be supported and accompanied in the experience of their child’s illness, beyond receiving information that should be tailored with regard to content and modalities. Therefore, a specific resource to support communication in this setting is warranted. Secondly, the involvement of the design agency occurred late in the development process. Its integration from the outset of the project could have eased addressing the feedbacks and translating them into solutions. However, the design agency had received information on the objectives of the booklet and the main critiques emerged during its development, and the research team provided ongoing supervision. Thirdly, the evaluation of the booklet was mainly quantitative in nature, with professionals reporting ratings on acceptability, usefulness, feasibility of use, and acquire knowledge; despite professionals had the opportunity to report open comments and suggest changes, qualitative work could have contributed more deeply to identify nuances that benefit from improvements.

Conclusions

The booklet developed helps address the lack of support tools on serious illness conversations for Italian professionals and could potentially improve the quality of serious illness conversations.

The co-creation process yielded an acceptable resource with good readability and excellent design, high content validity, and a high degree of perceived usefulness and acquired knowledge. Also, the time-based solutions favor the use of the resource in daily practice. All these features make the booklet ideally positioned to encourage changes in professional practice and a valid resource to enhance shared decision-making and care planning. In addition, the booklet has good potential for a wider distribution, as it is available on the website of a high-profile Italian society of palliative care and can be downloaded for free. Finally, translation to English and social media campaigns beyond congress presentations are planned to promote dissemination.

Supporting information

Acknowledgments

We would like to express our gratitude to all professionals and associations engaged in the development, validation, and evaluation of the booklet for their cooperation. We thank Ylenia Arnone and Alessio Turrini for their contribution in developing the booklet content, Alexandra Antal and Valentino Bissacca for their help in validating the resource, and Luisa Goglio for revising its design. Finally, we thank Dr. Nicola Cornally for her methodological guidance across the development and validation processes.