Abstract
Cross-disciplinary, arts-based interventions are gaining recognition for improving palliative care by addressing the complex experiences of patients with life-limiting illnesses. These interventions integrate healthcare, arts, and spiritual care. Despite their acknowledged value, challenges remain regarding the positioning, legitimacy, and autonomy of artistic and spiritual perspectives within academic and clinical settings. This study investigates how executors – researchers, spiritual caregivers (SCers), and professional artists – of the In Search of Stories (ISOS) intervention experienced transdisciplinary collaboration. Focus of the study is on exploring if and how ISOS fostered mutual learning between executors on working with art-based methods, including Rich Pictures (RPs), text-elicitation interviews, and artistic co-creation; or whether practices of boundary work dominate. Data from 21 evaluation interviews were analyzed using inductive thematic analysis. Mutual learning occurred between artists and SCers on time and agenda management skills, and on the relevance of using arts-based methods in palliative care. SCers framed the artistic co-creation as extending and deepening the outcomes of the RPs and text-elicitation interviews used to visualize and explore patients’ illness experiences. This broadened the scope of supportive care beyond the conventional role of the SCer. Artists and SCers also employed boundary work, as they were protecting the autonomy of their professions against perceived instrumentalization tendencies by researchers. As the arts and spiritual care become more common in healthcare contexts, tensions may emerge between practitioners’ wish for autonomy and the perceived goal-driven nature of medical care and research. To navigate these tensions, developers and implementers of cross-disciplinary collaborations in the medical fields should engage in proactive discussions with practitioners regarding their positioning and legitimacy within existing or emergent research and care frameworks. This ensures that their professional identities are acknowledged and reflected in their work, which may contribute to more equal collaborations in healthcare.
Keywords
Introduction
Cross disciplinary, arts-based interventions are increasingly recognized for their potential to enhance the quality of palliative care by addressing the multifaceted experiences of patients facing life-limiting illness (Lee et al., 2021; Rieger et al., 2023; Rusch et al., 2024; Turton et al., 2018; Zhang et al., 2025). These interventions often bring together diverse professional domains, including healthcare, the arts, and spiritual care, to respond not only to physical symptoms, but also to psychosocial and existential concerns. They represent a form of integrative practice that acknowledges the complexity of falling severely ill. However, while the value of incorporating artistic and spiritual modalities into palliative care is widely acknowledged, the practical and epistemological challenges of such collaborations remain underexplored (Archibald, 2022; Archibald & Blines, 2021; Rieger et al., 2023). Particularly in research contexts, questions arise regarding the positioning, legitimacy, and autonomy of artistic and spiritual perspectives within academic and clinical frameworks (Daaleman et al., 2008; Kruizinga et al., 2016; Rieger et al., 2023; Rusch et al., 2024; Sager, 2022).
This paper examines one such initiative: In Search of Stories (ISOS), a narrative multimodal intervention developed to support patients in dealing with advanced cancer as the experience of contingency. The concept of contingency refers to the experience of a life event that is disruptive to one’s life-narrative, evoking existential questions and concerns such as loss of meaning and identity (Scherer-Rath, 2014; van Laarhoven & van Poecke, 2024; Wuchterl, 2019). The protocol of the ISOS intervention is reflected in Figure 1, displaying the modalities and accompanying roles and tasks of key executors of the project. Visual representation of the In Search of Stories intervention.
Project ISOS was developed by a group of researchers with backgrounds in medical oncology, empirical religious studies, medical psychology, and elderly and community care. It evolved out of previous collaborations with SCers (Kruizinga et al., 2013, 2016, 2017, 2018a, 2018b, 2019; Hartog, 2021; Hartog et al., 2020) but now also included practitioners from the arts. While it was not the intention of the group members at first, initially defining the project as multidisciplinary, the ISOS intervention was framed as transdisciplinary research as it unfolded (Scherer-Rath, 2025). Doing so, the group acknowledged the value of transgressing disciplinary boundaries to improve palliative oncology care, where both patients and (spiritual) caregivers are confronted with boundary situations. That is, patients are confronted with a life-limiting illness, while caregivers are confronted with the limits of their profession, involving both physical, psychosocial, and existential care (Scherer-Rath, 2025). Consequently, the intention of the group members also became to empirically investigate the feasibility of co-executing a transdisciplinary intervention study. As such, it may serve as a site of inquiry into the practice and tensions of transdisciplinary collaboration, the purpose of which is reflected in the present study.
The concept of transdisciplinarity (TD) has been defined in many ways, with varying degrees of depth: from being used as a buzzword to being subject of deep philosophical reflections on the nature of knowledge production in contemporary modernity (van Baalen et al., 2021). Nonetheless, key features of transdisciplinary research have been determined after several decades of theoretical and empirical inquiry into the subject (Fam et al., 2018; Mobjörk, 2010; van Baalen et al., 2021; Wickson et al., 2006). First, TD is problem-focused, concerning itself with complex or “open problems […] that lack distinct system boundaries” (Mobjörk, 2010). Second, it is participatory in its design and organization, meaning that it involves scientists, but also actors external to science (Mobjörk, 2010). Third, it has an evolving methodology, which entails that practitioners allow methodological pluralism, take into account reflexivity on the dynamic problem under investigation, and manage diverse perceptions on theories and methods (Mobjörk, 2010; Wickson et al., 2006).
Putting TD into practice, however, may be challenging. This frequently concerns the issue of “mutual learning” (Jahn et al., 2012) between scientists and practitioners external to science – in case of the present study, SCers and professional artists. The concept of mutual learning refers to processes of “exchange, generation and integration of existing or newly developing knowledge in different parts of science and society” (Jahn et al., 2012). Bolstered by the ideal of equity-based research, boundary transgression in cross-disciplinary research is regarded as a condition for mutual learning and thus for innovation in knowledge production. In practice, however, equity-based research is often constrained by the development of power dynamics between practitioners (Jahn et al., 2012; Strumińska-Kutra & Scholl, 2022; Swist et al., 2016; van Baalen et al., 2021).
The aim of the present study, therefore, is to investigate whether and how the cross-disciplinary collaboration in the ISOS intervention resulted in mutual learning between researchers, artists and SCers on the goals of developing effective palliative care for advanced cancer patients using arts-based methods. Simultaneously, our aim was to investigate practices of boundary work: the drawing of symbolic boundaries – “conceptual distinctions made by social actors to categorize objects, people, practices, and even time and space” (Lamont & Molnár, 2002) – along disciplinary lines. It may be expected that in the process of transgressing disciplinary boundaries, practitioners will draw symbolic boundaries to protect discipline-specific values, practices, and identities. As such, we developed an evaluation of the ISOS intervention to study executors’ experiences of mutual learning and how this may benefit effective palliative care vis-à-vis practices of boundary work, potentially constraining effective care.
Below, we first explain how we used qualitative methods to investigate executors’ experiences of ‘doing’ transdisciplinarity. After presenting the results of our study, we engage in a discussion on the positioning of the arts and spiritual care in supportive care interventions.
Methods
Procedure and Participants
Overview of Participants
Because the project context is given, we wish to preserve the anonymity of participants and therefore excluded demographic information such as gender and affiliation.
The medical ethics review committee (METC) of the AMC decided that the Medical Research Involving Human Subjects Act did not apply to the ISOS project (reference number: W20_436 # 20.483). SCers and artists that participated in the ISOS intervention gave written informed consent for their participation. Additionally, they gave oral informed consent to be interviewed for the purpose of this study. Hence, they consented with the interview procedure of being audio recorded and with using their data for publication. Researchers that participated in this study gave oral informed consent to be interviewed, audio recorded, and to publish about results of the study by using coded data.
Data Collection
Interviews were carried out by NvP and EE, who both have a background in Cultural Sociology and are affiliated since 2021 as senior researcher and PhD candidate, respectively, at Amsterdam UMC. Both were involved in ISOS as researchers (i.e., analyzing outcomes of the intervention), yet were not involved in the design or implementation of the project. This gave them a relative outsider position to the project team, and it is from this position that the reflections described here are made. Accordingly, unlike other researchers who were involved from the outset of the intervention, they have not been interviewed for the present study and thus do not belong to the group of ‘researchers’ referred to in this paper.
The interviews were carried out according to the epistemological principles of active interviewing. Active interviewing is a type of interviewing that defines the setting of the interview as an interpretive practice (Holstein & Gubrium, 2000). This implies that the interview itself becomes a situation where knowledge is actively constructed, in and through researcher-participant interaction. As such, it allows the interviewer to provide the interviewee with possible linkages to previous answers, or to address contradictions and/or alternative thoughts and considerations in order “to explore incompletely articulated aspects of experience” (Holstein & Gubrium, 2000).
The interviews were structured by the following themes: (1) personal definition(s) of the ISOS project and its primary goals; (2) (developing) roles and (3) relationships within ISOS; (4) developing relationships with participating patients; (5) experiences of cross-disciplinary collaborations and disciplinary boundaries; (6) perceptions of and ideas about evaluation criteria; (7) successes and areas of improvement, and (8) other potentially relevant issues.
Data Analysis
All interviews were held online, through a secured version of MS Teams. They were audio recorded on an encrypted device (Philips PocketMemo DPM-8000), and transcribed ad verbatim. The interviews lasted between 47 and 108 minutes. The transcriptions were stored on a secured hospital drive, and uploaded to qualitative software analysis program MaxQDA 2022 (version 24.5.1).
Overview of Main (Sub-)Themes Emerging From Data Analysis
Methodological rigor was established, first, by NvP and EE making reflexive notes after each interview and, second, by NvP discussing preliminary outcomes of the analysis with EE (sociologist) and HvL (medical oncologist) during two calibration sessions (January 30th and February 20th, 2025). Aims of these sessions were to identify gaps and/or to refine and enrich data interpretation by NvP. A third calibration session was organized with LN-E (March 19th, 2025), who has a background in philosophy and is an expert in designing and evaluating transdisciplinary education and research projects involving the arts. As LN-E had no formal role in project ISOS, the intention of the third calibration session was to further enrich and nuance data interpretation by integrating another, different perspective on the outcomes of this study. After the third calibration session, main themes and sub-themes were finalized and data analysis was completed.
Results
Data analysis revealed the emergence of eight major themes: (1) Project descriptions and professional aims; (2) Perceived project structure; (3) Distance; (4) Time, space, and pace; (5) Working protocol-based; (6) Developing roles and professions; (7) Power dynamics; (8) Successes and areas of improvement (cf. Table 2).
Project Descriptions and Professional Aims
Researchers predominantly described ISOS as a project that explores how practitioners from different domains (i.e., spiritual care, academic research, and the arts) are able to collaborate to execute a meaningful intervention for patients diagnosed with advanced cancer. SCers had a more patient-centered perspective: they perceived ISOS to be developed to support patients after receiving their diagnosis. Artists primarily focused on the role of the arts and, more specifically, artistic co-creation, in patients dealing with existential concerns.
The aim for SCers to participate in the intervention was perceived as twofold: on the one hand, to explore and enhance their professionalism; on the other, to gain insights into how the intervention may improve patients’ quality of life. Researchers primarily focused on feasibility: on assessing whether (1) the employed instruments (RE-LIFE questionnaire, RPs, literary texts, artistic co-creation; cf. Figure 1) are functional, and (2) whether the interaction and collaboration between professional artists and spiritual caregivers is productive. Artists had mixed opinions: for some, their incentive to participate in ISOS was centered on the collaboration with SCers and medical professionals, and how this may contribute to enrich their artistic practice. For others, the purpose was to investigate whether and how artistic co-creation could be beneficial for patients nearing their end of life.
Perceived Project Structure
Artists and SCers perceived the intervention as sequentially structured. Contact moments between SCers and artists was restricted to the (match and) handover meetings (cf. Figure 1), which were repeatedly discussed using the metaphorical expression of ‘passing the torch to each other.’ These contact moments were experienced differently: some artists indicated that SCers had done very thorough preparatory work and were able to transfer information about participants with great precision. As a result, the artist could seamlessly take over the process. Concurrently, they saw the additional value of working with RPs and literary stories prior to engaging in an artistic co-creation with a patient (Supplement Table 3, quote 1/2, A5/A10). Other artists, however, perceived the previous steps of the intervention as a barrier to the artistic co-creation. They argued that it constrained their creativity – as if the co-creation turned into a mere exercise of filling in predefined elements (ST 3, quote 3, A6). Similar sentiments were shared by SCers, who occasionally referred to the conversations based on the literary texts as a “fill-in-the-blanks exercise” (ST 3, quote 4, SC3).
Researchers also described ISOS as sequentially structured, but added the iterative nature of the intervention. The purpose of the project was to build up layers of existential reflection in patients through the RE-LIFE questionnaire, the stories, and the artistic co-creation sessions, respectively. SCers and artists also emphasized the iterative nature of building up layers of reflection in patients, and saw this occurring in the conversations they had with patients as well as in and throughout the artistic co-creation sessions. SCers perceived this as a missed opportunity, as they would have appreciated feedback from artists on how patients proceeded in the intervention in terms of reflecting on existential concerns (ST 3, quote 5, SC1). Artists also retrospectively realized that establishing such feedback loops would have been useful for SCers (ST 3, quote 6, A4).
Distance
Executors of the ISOS intervention – researchers, SCers, and professional artists – perceived each other as distanced. Some researchers positioned themselves “in the outer ring” (R5) of the project, as they primarily engaged as co-author of publications. Others were involved in project coordination, in the collection and analysis of data, and/or in the (match and) handover sessions with artists and SCers – and thus had a more immersive role. Nonetheless, researchers that had a more active role also perceived a distance towards SCers and, most notably, artists (ST 3, quote 7, R3).
Artists perceived their position as distanced from SC(ers) and research(ers). A6, for instance, created a distinction between the “house of care” and the “house of creativity,” the former referring to the academic hospital, the latter to the site of the art academy. While some artists did perceive their role as integral to the oncological care of patients (ST 3, quote 8, A4), most of them perceived the co-creations as located somewhere outside of the project – in spaces self-referred to as an “island” (A11) or “autonomous unit” (A6). As A11 remarked, “that little device [referring to the audio recorder documenting the co-creation sessions, Ed.] was basically the only plug into the rest of the organization.”
SCers perceived a distance from both research, oncological care, and the artistic co-creations. That is, as soon as SCers ‘passed the torch’ to artists, they perceived themselves to be positioned outside of the project, while occasionally remaining in contact with patients that were participating in the project. As SC 1 (ST 3, quote 9) observed, the positioning of spiritual care outside the intervention was seen as a result of the arts holding a dominant position. SC4, on the other hand, experienced that by engaging in the project, they felt closer to both patients and oncological caregivers, and thus started to experiment with different degrees of professional distancing. As indicated, this was predominantly because of the conversations about the RPs and the literary texts, which enabled them to work together with patients, rather than being in front of, or opposed to, them by ‘merely’ having a conversation and asking reflective questions. At the same time, however, this meant that participants passing-away had a greater emotional impact on SC4 as both a professional and a person (ST 3, quote 10, SC4).
Time, Space, and Pace
Both researchers and SCers observed that artists took up more time – and therefore space – within the intervention compared to the other modalities of the ISOS intervention (cf. Figure 1). Consequently, the intervention became “imbalanced” due to what R4 framed as the “boundlessness of the artistic co-creation.” This refers to artists contesting the planned duration of the co-creation sessions as the intervention unfolded (4 sessions maximum, 1 hour each, according to the project protocol) and, as such, prolonged the average duration of the intervention. SCers similarly described the prolonged nature of the artistic co-creation modality, and attributed this to lack of time and agenda management skills of artists, which are a requirement when working with patients who have limited time due to the nature of their disease (ST 3, quote 11, SC3). Trajectories with said patients, according to SCers, require a certain pace (ST 3, quote 12, SC1). Artists, indeed, perceived time and agenda management as an issue: out of respect for people living-with severe illness, they were cautious in their communication about organizing meetings with them. Hence, a skill they learned from SCers is to better manage their time by taking agency in agenda-setting, for instance by synchronizing meetings with the cyclical rhythm of patients’ daily lives structured by receiving treatment in the hospital (ST 3, quote 13, A1).
For both researchers and SCers, the imbalance between the artistic co-creation and the other modalities of the intervention was problematic, as it generated “a lack of completion.” For SCers, this frequently implied that a patient passed away during the co-creation modality, and they were then unable to complete the intervention – as if it “went out with a whimper” (SC1). Obviously, SCers are familiar with the situation of patients passing away during their treatment. However, as SC4 observed, by engaging in an intervention, the collaboration with patients was granted with the promise of completeness. This was particularly due to the closing conversation (Figure 1), which was frequently missing due to aforementioned reason.
Researchers shared similar sentiments, and added that the prolonged nature of the artistic co-creation modality interfered with their interest of collecting relevant data. This included data on how patients experienced participating in the intervention in its entirety (cf. Figure 1), from filling out the first questionnaire up to the final evaluation conversation with the researcher (ST 3, quote 14, R4).
Working Protocol-Based
As discussed, a primary reason for SCers to participate in the ISOS intervention was to enhance their professionalism. This included their wish to develop skills to work “more structured” (SC4) or “to adopt a more protocol-driven approach” (SC1). As SC3 explained, in his daily practice, he already works according to a particular method when engaging in conversations with patients. Simultaneously, however, he is driven by an eagerness to add new conversation techniques to his developing toolbox (ST 3, quote 15, SC3). Similar aims were shared by other participating SCers.
However, SCers also explained that there were cases in which they explicitly deviated from the protocol. Did they so when they felt that it would “disrupt the dynamics of the conversation” (SC1), or when patients responded emotionally and it thus felt inappropriate to stick to the protocol. Moreover, SCers sometimes experienced that they “were forced into a mold” (SC2) – for example, when working with the literary texts, as the structured nature of the reading guide “felt a bit forced” (SC3).
Aligned with these observations, SCers remarked that they had to adapt to employing a protocol-based mindset. They described themselves as caregivers who have a “neutral” or “safe haven function” within the hospital. Compared to doctors or nurses, for instance, SCers don’t have a predetermined agenda when talking to patients, the purpose of which is to allow patients to discuss concerns that they neither wish to share with other caregivers, nor with relatives/informal caregivers (ST 3, quote 16, SC4). The idea(l) of working independently, thus, contradicted the practice of working with a protocol. Protocol-based working, however, is a method that SCers perceived as becoming increasingly dominant within their profession as well as contributing to the professionalization of their field. Consequently, and somewhat paradoxically, they transposed the practice of working according to a protocol to the profession of the artist working in palliative care, as it would benefit their collaboration with patients.
Artists themselves, in fact, were mixed in their opinions about working according to a protocol. Some preemptively decided to stick to the ISOS intervention protocol, as they felt that they were participating in a medical intervention designed for patients with incurable cancer. Others, however, purposefully deviated from the protocol, as they found it difficult – or even “unnatural” (A3) – to be constrained by time. Some artists argued that working with a protocol-driven approach clashes with the nature of artistic professions in general and with the ‘method’ of artistic co-creation in particular. The latter they framed as “associative” (A4), “open” (A4), “emotionally meandering” (A6), or based on “not knowing” (A3). The method of not-knowing, accordingly, was described as the incremental development of a work of art in and through a co-creation process, where the process was perceived as (part of) the artwork itself. As the ‘method’ – and even the artistic discipline – may change with each individual patient, working with a fixed protocol was perceived as feasible for the practices of care yet contradictory to the nature of artistic creativity (ST 3, quotes 17/18, A3/A10).
Perceptions of Roles, Professions, and Disciplines
Spiritual Care(giver)
SCers reflected on the nature of their profession and how elements of their profession changed due to participating in project ISOS. SCers perceived themselves as caregivers who have “supportive conversations with patients” (SC4). As SC3 remarked, his conversations with patients are structured by asking questions that work from a cognitive (thinking) towards an emotional (feeling) and existential (being) dimension. Within ISOS, however, it was easier (and faster) for SC3 to get towards the existential dimension due to working with instruments such as the RPs and literary texts. This was experienced as such, because patients were not only engaging with him verbally, as with the RPs, but were associatively and creatively putting their illness experiences on paper by drawing. As SC3 explained, working with both verbal and visual methods “opens up another human dimension.” Working with RPs and literary texts, indeed, is something that SCers would integrate in their care practice, in situations where it feels relevant to do so and when the conditions of the meetings with patients (e.g., not being bedridden) enables the use of said methods (ST 3, quote 4, SC3).
The benefits of consecutively working with artists, according to SCers, was that patients could further deepen and reflect on the existential dimension of their illness experiences, as well as that they could manifest their experiences in a physical work of art. Hence, SCers perceived participating artists as “partners in the imagination” (SC4). By this they meant that, like a SCer, artists were discussing existential questions and concerns with patients by using arts-based methods. Yet, the complementary role of artists was to materialize existential experiences into a work of art. This was seen by SCers as beneficial for patients, as they could use the artworks as conversation pieces – i.e., to have conversations with loved ones about some of their deepest questions and concerns. Additionally, it was a way for patients to create a legacy. Thus, by collaborating with artists in the project, the supportive care provided by SCers transcended their own role. This view was shared by researchers, who perceived the strength of artists to lie in their ability to unlock creativity in people who feel trapped in life by their diagnosis of incurable disease (ST 3, quote 19, R1). Thus, they agreed with SCers on artists’ complementary role – i.e., their ability to continue and deepen the transformative process in patients.
Alongside perceiving their role as preparing or facilitating the artistic co-creation, SCers perceived themselves as “liaison managers” (SC4) – as they did not ‘just’ engage in conversations with patients, but also had to communicate with them about the intervention protocol, about next steps in the intervention, and had to set-up connections with artists. This view was shared by artists, who generally perceived the role of the SCer within ISOS as preparatory, facilitating their artistic co-creation processes.
Research(er)
Researchers explained that the added value of collaborating with artists was twofold: first, it improved the quality of the arts-based intervention, for instance in curating the collection of literary texts (ST 3, quote 20, R3). Second, it allowed them to design an intervention that was effective in supporting patients who, due to their diagnosis, had lapsed into an existential vacuum. Working with a co-creative method, artists have the skills to instigate creativity in patients and, consequently, to foster the developing of a different perspective on their life circumstances marked by severe illness (ST3, quote 19, R1).
Artists appreciated the work of researchers as they managed to design an intervention that was open and flexible regarding the definition of the artists’ role. That is, within project ISOS, artists were not invited to generate particular effects (e.g., to improve wellbeing or quality-of-life in patients), but to co-create an artwork together with a patient (ST 3, quote 21, A10). Some artists, however, did perceive a difference in culture between academic research and the arts. They perceived the culture of academic research as “purist,” “non-flexible,” and “complicated,” and the accompanying work ethic as not being able to “improvise” or “think out of the box” – “up to the point of becoming moralistic” (A3); i.e., being unable to move beyond the research protocol.
SCers, as discussed, engaged in project ISOS with both a care and a research mindset, the latter because they wanted to educate themselves in working protocol-based. More generally, however, they perceived the practice of doing academic research as a “one-sided situation” (SC1). This remark related to prior observations of research practices in the context of clinical trials, where the aims of conducting research (collecting data) occasionally interferes with the care needs of patients. SCers did not perceive this to occur in ISOS, however.
Oncological Care(giver)
The general consensus among both researchers, SCers, and artists was that (the) oncological care(giver) had a more distanced role within the intervention. That is, the oncological treatment of participating patients was always there in the background and, additionally, doctors and nurses participated in patient recruitment. Yet, a close collaboration with oncological caregivers did not occur. Moreover, SCers discussed that they were rather reluctant in sharing information about patients with their attending oncologists, mainly due to privacy concerns – although such feedback loops were occasionally established (ST 3, quote 22, SC2).
Some artists, as discussed, did feel that they were participating in the oncological treatment of patients, as they were supporting them in their existential concerns through artistic co-creation. However, feedback with oncological caregivers about the process and outcomes of the co-creations was not realized, apart from a few informal interactions with oncologists participating in the intervention as researchers.
According to researchers, oncological caregivers remained in the background due to the explorative nature of the project. As R6 remarked, caregivers will take a more prominent role as soon as effects of interventions – and thus the benefits for patients’ wellbeing – are being validated (ST 3, quote 23, R6).
Art(ist)
Artists perceived their role to be facilitating, in the sense of developing equity-based collaborations with patients in and through a process of artistic co-creation. They felt responsible for developing such collaborations, as well as for safeguarding a sense of safety, because patients were sharing sensitive issues and emotions with them. In doing so, artists aimed to keep a balance between being personally involved, on the one hand, and protecting their personal boundaries by maintaining professional distancing, on the other. Artists achieved the latter, for example, by limiting meetings with patients to the co-creation sessions, and/or by not attending funerals (ST 3, quote 24, A4). Nevertheless, keeping personal boundaries was perceived as challenging: cases were discussed in which artists felt emotionally involved, for instance when patients passed away, or when a patient postponed the closing of the co-creation as it coincided with the end of their life.
Developing equal relationships with patients was considered essential to the artistic co-creation process. As A6 discussed, “a psychologist needs information with the purpose of helping the patient. I needed information to help myself, too – to be able to guide the artistic process in a certain direction. And that makes the relationship more equal, I believe.” Yet, maintaining equal relationships with patients was occasionally challenging. Cases were discussed where artists experienced that they were treated by patients as service providers. Then, they felt instrumentalized, which constrained their abilities to develop rapport and reciprocity throughout the co-creation process, or to develop their creativity at large (ST 3, quote 25, A9).
Furthermore, artists perceived their role within ISOS as multiple: besides artist, they considered themselves to be pedagogues and researchers. They were pedagogues, in the sense of training patients in their artistic skills and in guiding them during the co-creation process. They were involved as researchers, in the sense of learning how to do a co-creation in the broader context of a palliative care intervention. For the art coordinators, this even implied the expanding of their role as artist to that of a trainer (of fellow artists), training developer (for artists and SCers), liaison manager (of individual co-creations), coordinator (of the entire co-creation modality), and researcher (of how to do co-creation in oncology/palliative care). Hence, one of the art coordinators framed themselves as a “shapeshifter” (A3).
Finally, artists experienced a blurring of roles: when patients were expressing emotions, or when sharing existential concerns, they perceived themselves as (spiritual) caregivers. Artists were conscious of their professional and personal boundaries and therefore did not purposefully take the role of SCer. SCers and researchers, however, perceived this blurring of roles to be both positive and problematic. It was considered positive, as it symbolized a continuity of roles within the intervention. They thought it was problematic, however, as the artists were not trained to work as (spiritual) caregiver (ST 3, quote 26, R1). Thus, there was a general consensus among SCers and researchers that the artists should operate within the boundaries of their own profession. And while SCers appreciated artists for working “unstructured” and “boundless” (SC1), which were perceived as key conditions for (instigating) creativity in themselves and in patients, they at the same time – and somewhat contradictorily – argued, as discussed, that they should work more structured and set limits to the time and space given to the artistic co-creation.
The Artist as Co-creator
Artists defined the practice of artistic co-creation both positively and negatively. It was negatively defined as “not a method,” “not a discipline,” “not a format,” and “not based on a protocol.” Such negative definitions were relationally determined, implying that they were employed in practices of distinction. That is, artistic co-creation was defined as ‘not a method’ to distinguish it from research and care practices that were perceived as protocol-based and thus to be working according to a predefined method (ST 3, quote 17, A3).
Positive definitions predominantly revolved around perceptions of artistic co-creation as process-based: the idea that the physical artwork is a mere manifestation of the co-creation process. To illustrate the process-based nature of artistic co-creation, various metaphors were employed, such as that co-creation is like the “composing of genuine moments” (A4); that artistic co-creation is like creating “emotional movements” (A6), or that it is largely based on the ‘method’ of “not-knowing” (A3): the idea(l) of creating something out of the unknown (ST 3, quote 27, A6).
Concurrently, artistic co-creation was perceived by artists as a form of communication, in both verbal and non-verbal terms – the latter through interacting with materiality. Working with materials was perceived as essential to the practice of co-creation, as it is through colors, images, fabrics, art historical references, and/or sounds that the patient is enabled to communicate one’s life-narrative (ST 3, quote 28, A1).
In cases where artists discussed the importance of materiality, distinctions were made between practices of creative therapy and artistic co-creation. The former was perceived as goal-oriented, while the latter was defined in non-goal-oriented terms. As A5 metaphorically explained, communication through materials is like “taking a detour,” which is essential in the transformative process of discovering new elements within one’s life-narrative. Developing such novel insights cannot be achieved with a predetermined agenda in mind, such as in therapeutical practices where art is used as an instrument in treating pathology (ST 3, quote 29, A9).
In defining the practice of artistic co-creation as non-goal-oriented, it was also contradicted by artists with practices of (spiritual) care, where instruments are used to achieve certain aims. SCers, indeed, expressed a preference for working with instruments when engaging with patients. At the same time, however, they wished to distinguish themselves from other caregivers who strongly work goal-oriented and, thus, cannot work “neutrally.” Researchers held different views on this issue: while those belonging to the intervention’s inner circle shared the view of artists on the non-goal-oriented nature of artistic co-creation, researchers in the outer circle did occasionally equate the arts in health with practices of creative therapy. Such framings of art in therapeutical terms triggered artists involved in the ISOS intervention to emphasize the ‘open’ and ‘free’ nature of artistic co-creation – i.e., to not instrumentalize the role of the arts and the artist within a medical intervention (ST 3, quotes 30/31, R5/A3).
Power Dynamics
Both researchers, SCers, and artists noted the emergence of power dynamics throughout the intervention. Researchers observed the emergence of power dynamics concerning the demarcation of research practices and accompanying responsibilities between academic researchers and artists (ST 3, quote 32, R1). Moreover, they perceived the role of the art coordinators as both valuable and problematic. It was considered valuable as they contributed to developing the intervention modalities, such as curating the collection of literary stories (cf. Figure 1). This was perceived as contributing to the quality of the intervention (ST 3, quote 20, R3). Simultaneously, however, the developing role of the art coordinators was experienced as problematic, as they spent additional time questioning predefined steps within the intervention. As a result, researchers perceived the collaboration as “slow-moving and frictional” (R6).
Moreover, a hierarchy was built into the project with the emerging role of the art coordinators, due to which some researchers became intermediaries between coordinators operating at the art academy, on the one hand, and coordinators operating at the side of the university, on the other (ST 3, quote 33, R4). The art coordinators themselves perceived a hierarchy in interests along disciplinary lines. They discussed cases in which they employed a rather defensive attitude, as they felt that they needed to protect the interests of artists and patients against the interest of researchers and SCers, or to achieve a balance in the space available for the various modalities of the intervention (ST 3, quote 34, A5). Protecting the interests of artists, however, resulted in the perceived imbalance by researchers and SCers, with the artistic co-creation becoming contested space. SCers, finally, reflected on situations where artists wished to include the co-creative artworks in some of their own exhibitions. This created a conflict between the artists’ personal interests and the spiritual care needs of patients – the latter of which should always take precedence, according to SCers. (ST 3, quote 35, SC4).
Successes and Areas of Improvement
Researchers, SCers, and artists regarded their collaboration in the ISOS intervention as successful in demonstrating feasibility and developing a promising method to support patients’ existential concerns. Researchers recommended a more balanced allocation of time and space across all modalities of the project. Additionally, they emphasized that deeper dialogues between SCers and artists should be fostered through establishing more contact moments and feedback loops.
SCers identified three key successes: (1) the artistic co-creations facilitated patients’ ability to express themselves and to engage in a dialogue (with loved ones) on existential issues; (2) participating in the ISOS intervention contributed to the professionalization of their field; and (3) it expanded the use of reflective tools such as RPs, which were being considered for integration in their clinical practices. They also suggested to incorporate training opportunities on their own personal meaning-making strategies, which could enable them to develop valuable knowledge on executing their role as SCer, in close collaboration with patients.
Artists valued the open and collaborative framework of the intervention, enabling independent work within a care context. Yet, they advocated for (1) improved emotional preparation regarding patient mortality; (2) a different emphasis of feedback sessions, more focused on the affective dimension of engaging in artistic co-creation (rather than sharing lessons learned), and (3) greater reciprocity among and balance between disciplines. While the art coordinators appreciated the intervention’s linear structure to achieve thematic coherence in the intervention, others favored a more integrated, entangled approach, which could be operationalized through the integration of more feedback loops during the execution of the intervention, as also recommended by researchers.
Discussion
This study examined how cross-disciplinary collaboration in the ISOS intervention facilitated mutual learning among academic researchers, SCers, and professional artists in delivering palliative care for advanced cancer patients, while exploring practices of boundary work. SCers framed participating artists as “partners in the imagination,” as they were able to extend and deepen the outcomes of the RPs used to visualize patients’ illness experiences. The resultant artworks, co-created with artists, facilitated patient dialogue with loved ones and the creation of a personal legacy, thereby broadening the scope of supportive care beyond the conventional role of the SCer (Weeseman, 2024). This cross-disciplinary collaboration thus fostered a complementary dynamic, benefiting patients’ existential wellbeing (Prior et al., 2018). Nonetheless, SCers actively maintained disciplinary boundaries, emphasizing that artists should not take on the role of SCer during the execution of the artistic co-creation. In addition, they advocated that artists should develop more structured methodologies while collaborating with patients. Artists concurred, reporting enhanced communication skills and the adoption of time and agenda management skills when engaging with patients, due to their collaboration with SCers.
SCers perceived working with a structured protocol as beneficial, enhancing their methods and communication tools, especially through the use of RPs and literary narratives – which promoted a more equal patient partnership and better access to patients’ existential experiences. They expressed intent to incorporate these methods, particularly the use of RPs, into their care practice. However, SCers also experienced working with a protocol-driven approach as constraining their role. This reflects ongoing tensions in their profession due to the fluidity of their professional identity and the contrast between non-evidence-based spiritual care practices and the evidence-driven demands put on other members of palliative care teams, including doctors and nurses. This tension, which has been highlighted in prior studies (Daaleman et al., 2008; Gijsberts et al., 2019; Kruizinga et al., 2016; Sager, 2022), was evident in our findings.
The dual imperative of engaging in a protocolled intervention study while aiming to foster a sense of autonomy positioned artists, quite similarly to SCers, in a liminal space. Consequently, they were navigating the demands of executing care intervention protocols, on the one hand, while striving to preserve their distinct professional identity and related values and practices, on the other (van Baalen et al., 2021). Situating these findings within studies on cross-disciplinarity, the concepts of transversality and disciplinary pliability are relevant (Fam et al., 2018; Guattari, 2015; Nicolescu, 2022; Prior et al., 2018; Shults, 2006; Steelman et al., 2019). Transversality denotes the creation of “transverse spaces” (Prior et al., 2018; Shults, 2006) in cross-disciplinary research, where practitioners negotiate agreements and divergences, while fostering shared experiences and ideas around innovation in knowledge production. Prior et al. (2018) have argued that disciplinary pliability – defined as the balance between flexibility and stability within a discipline – is a key enabler of transversal engagement. That is, the crossing of disciplinary boundaries is possible only if practitioners are willing to fold elements of their disciplines (e.g., ideas around theories and methods employed) with those of another discipline, without necessarily erasing disciplinary boundaries altogether.
Our findings indicate that SCers viewed artists as complementary contributors to the existential care of patients, as well as that some artists recognized the thematic coherence that collaborating with SCers brought to the intervention, particularly around patients’ experiences of dealing with narrative disruption. However, SCers and artists did neither regularly check in with each other, nor update each other on their shared journey with patients – and therefore a more integrative collaboration between them was not sustained. This was partly due to the nature of the intervention’s design, sequentially separating modalities and accompanying roles and tasks, and partly due to the non-instrumental approach to artistic co-creation, which was perceived by artists as conflicting the instrumental nature of medical research and care. Conversely, while researchers and SCers admired the ability of artists to instigate creativity in patients who experience a sense of entrapment in life, their unstructured and boundless methods of working were seen as opposing the protocolled way of working employed in medical research and (spiritual/palliative) care. Consequently, the artistic co-creation modality became discursively prominent within and throughout the intervention, yet took an isolated position, with artists – and researchers and SCers alike – engaging in practices of boundary work rather than in practices of disciplinary folding.
Historically, the profession of the artist is embedded in discourses of autonomy and authenticity, producing the idea(l) of the autonomous – i.e., non-instrumental – nature of artistic creation (Bourdieu, 1984; Taylor, 1992; van Poecke, 2017). Over the past three decades, values of authenticity and autonomy are increasingly contested with the emergence of participatory (Bishop, 2023) or dialogical (Kester, 2004, 2011) artistic practices. Within such practices, art is created not in isolation for audiences, but operates in the life worlds of participants according to principles of co-creation and equity-based collaboration (Rancière, 2009; Van Poecke, 2021; Van Poecke et al., 2025a). It has been argued that engaging in co-creative art projects offers transformative potential to participants, as they are enabled to foster self-distancing and work on reconfiguring their (group) identity (Kester, 2004; van Laarhoven & van Poecke, 2024; Van Poecke, 2021; Van Poecke et al., 2025a). This idea(l) forms the foundation of the artistic co-creation modality that was part of the ISOS intervention (van Laarhoven & van Poecke, 2024; Van Poecke et al., 2025a). Indeed, artists purposefully decided to participate in the intervention to enhance their artistic practice by collaborating with researchers and (spiritual) caregivers; thus, to situate their practice in the broader context of institutionalized palliative care. Nonetheless, our analysis also revealed that values of autonomy and independence prevailed in the discourse of participating artists, resulting in practices of boundary work along disciplinary and, more concretely, methodological lines. Additionally, it was evident in the developing role of the ‘art coordinators,’ who, as the intervention unfolded, took the role of gatekeepers in protecting the interests of artists against those of researchers and SCers.
These findings resonate with research in transdisciplinarity studies, where a distinction is made between consulting versus participatory TD (Mobjörk, 2010). While the former term captures the idea of the arts having an instrumentalized position, the latter term relates to the arts being “the very canvas on which the collaboration is played out” (van Baalen et al., 2021). Artists participating in project ISOS generally appreciated the open and equal design of the intervention. Nonetheless, a fear of being instrumentalized was explicitly present. This resulted in the artistic co-creation modality operating as an autonomous sphere within the intervention at large, according to its own logic and methodology. For researchers, while being appreciative of the collaboration with artists for improving the quality of the intervention, this was perceived as problematic. In their opinion, it slowed down the pace of the intervention and, consequently, interfered with their interest of completing the intervention and collecting timely data capturing the impact of the intervention in its entirety on patients’ existential wellbeing.
Strength and Limitation of the Study
A principal strength of this study resides in its multidisciplinary research team, which facilitated the integration of transdisciplinary studies, empirical religious studies, and cultural sociology in the evaluation of cross-disciplinary collaboration within palliative oncology care. The application of sociological theories on boundary work elucidated prevailing discourses of professional autonomy that informed role enactment and, at times, constrained the mutual learning processes essential for advancing research on effective palliative care for advanced cancer patients.
A notable limitation pertains to the absence of patient perspectives in this evaluative analysis. Although project ISOS was designed and conducted according to the principle of involving patients and patient organizations throughout its phases, their direct inclusion here was precluded by the mortality of the majority of participants. Patient-centered findings and evaluations have been disseminated in previous publications related to the project (Weeseman, 2024; Weeseman et al., 2025). Nonetheless, for future projects, the evaluation would benefit from including patients' voices alongside executors’ voices. Making the distinction between ‘patients’ and ‘executors’, in fact, contradicts the participatory ethos underlying arts-based interventions like project ISOS. Including the voices of patients in the evaluation could be achieved, for instance, by including analyses of patients’ RPs and the accompanying interviews.
Conclusions and Future Perspectives
Our evaluation of the ISOS intervention revealed that the incorporation of artistic and spiritual modalities within a palliative care and medical research context may generate tensions concerning artists’ and SCers’ sense of autonomy versus the perceived goal-oriented, instrumental paradigms of medical care and research. This particularly concerns the integration of artistic co-creation methodologies in a manner that complements rather than perceivably conflicts with established research instruments and protocolled care practices. We advocate that the arts should have a relative autonomous position within a medical (research) context, and that this should be clearly discussed and defined from the outset of an arts-based intervention, to mitigate instrumentalization concerns and to preserve professional identities of all executors involved.
A parallel, albeit less pronounced, necessity exists for SCers, who, despite greater familiarity with care protocols, require negotiated space to maintain professional autonomy while conforming to structured, evidence-driven practices that contribute to their field’s professionalization. Thus, in developing effective palliative care for people living-with advanced cancer, comprising both medical, psychosocial and existential support, disciplinary boundaries should not necessarily blur or altogether dissolve. Eventually, for caregivers, it is beneficial to include both members in their palliative care team who follow a medical-instrumental approach and those who take a more non-instrumental approach. This, however, entails that developers and implementers of cross-disciplinary research projects in the medical fields should engage in timely and proactive discussions with all stakeholders involved regarding their positioning within existing or emergent medical/palliative care frameworks.
Supplemental Material
Supplemental Material - Mutual Learning and Boundary Work in Palliative Oncology Care: A Qualitative Evaluation Study of a Transdisciplinary Intervention Using Arts-Based Methods
Supplemental Material for Mutual Learning and Boundary Work in Palliative Oncology Care: A Qualitative Evaluation Study of a Transdisciplinary Intervention Using Arts-Based Methods by Niels van Poecke, Emily R.E. Evans, Michael Scherer-Rath, Nirav Christophe, Liesbeth Noordegraaf-Eelens, Hanneke W. M. van Laarhoven in International Journal of Qualitative Methods.
Footnotes
Acknowledgments
The authors would like to thank all participants who took part in this study for their time and dedication to the intervention evaluated and the In Search of Stories project as a whole. Also, we would like to thank the anonymous reviewers for providing us with valuable feedback, which has considerably improved the quality of this article.
Ethical Considerations
The medical ethics review committee (METC) of the Amsterdam Medical Center (AMC) decided that the Medical Research Involving Human Subjects Act did not apply to project In Search of Stories, of which the present study is related to (reference number: W20_436 # 20.483).
Consent to Participate
Written and oral informed consent from every participant was obtained at the start of participating in this study.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was supported by the Dutch Cancer Society, grant number 11507.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Data Availability Statement
The datasets used and analyzed during the current study are available from the corresponding author on reasonable request.
Supplemental Material
Supplemental material for this article is available online.
References
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