Design

A qualitative research approach was adopted in which patients were asked to participate in a single Art-Based Learning session, either online or in the hospital, followed by a semi-structured interview on the exhibition and the method. In these interviews, the patients could speak from their experience with Art-Based Learning, and were thus seen as experts. This bottom-up approach aligns with the so called ‘curatorial turn’, shifting from top-down decisions by art professionals to a more collaborative, participatory approach [17]. The COREQ 32-item checklist was used to enhance transparency, comprehensiveness and reliability of this study [18]. The study was reviewed and deemed exempt from ethical approval by the Medical Ethical Committee of the Amsterdam Medical University. The committee determined that external ethical review was unnecessary, as the study did not fall under the Medical Research Involving Human Subjects Act (no. 2024.0068, February 7th 2024).

Participants

Patients were included in the upper gastro-intestinal outpatient clinic of the department of Medical Oncology of the Amsterdam UMC. Purposive sampling ensured representation of the target demographic. The following inclusion criteria were used:

• ≥ 18 years
• Diagnosed with metastasized cancer
• WHO performance status 0 (asymptomatic) or 1 (symptomatic, fully ambulatory)
• Proficient in Dutch
• Able to independently come to the hospital
• Or have access to internet, a laptop or tablet, and microphone

Patients were first approached by their attending physician. The attending physician were instructed to only approach those patients without cognitive impairments. Patients who were interested in participating were provided with detailed information about the study by MG. To mitigate potential cultural barriers and ensure participants felt comfortable, MG emphasized that prior knowledge of or experience with art was not required, reinforcing the notion that they were the experts in their own experiences. This approach aimed to create a space for honest and open dialogue. After agreeing to participate, the patients received an information letter and a written informed consent form was obtained before the session. Inclusion continued until data saturation was reached, marked by a repetition in responses.

An exhibition for Art-Based Learning

We organized an on-site and online Art-Based Learning exhibition using the Amsterdam UMC art collection. Fifty artworks were selected by SK and JL based on four concepts, which are described in Table 2.

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Table 2. Four concepts for curating practice.

https://doi.org/10.1371/journal.pone.0342436.t002

The artworks were arranged along three color-coded art routes in the hospital, as shown in Table 3, to examine the feasibility of an exhibition in a hospital environment, and test different types of exhibition spaces in terms of light, color, and amount of hospital visitors. Additionally, an online museum was created on framevr.io for the online sessions, featuring a 3D space that mimicked a traditional white cube and included the complete selection of 50 digitized artworks.

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Table 3. Descriptions of art routes in the hospital.

https://doi.org/10.1371/journal.pone.0342436.t003

The sessions were led by professional art educators, trained and certified in guiding Art-Based Learning. FK facilitated the sessions in the hospital, while RK guided the sessions in the online museum. Both educators used the same protocol. However, based on RKs experience with the method online, we allocated more time for the introduction to explain the navigation tools, leaving less time per step. Each session was allotted 45 minutes.

Data collection

The data were collected between April 2024 and July 2024. SP and FC designed an interview schedule presented in Table 4. The topics in the interview schedule were derived from the following preliminary and ongoing research: i) a literature review investigating factors that might contribute to a meaningful art-based method in palliative care (manuscript forthcoming); ii) data collected by SP from interviews on curatorial practice in palliative care with curatorial experts (manuscript forthcoming); and iii) the pilot study on Art-Based Learning [15]. The interview schedule for the online group was slightly modified to address the virtual space and location.

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Table 4. Brief description of the interview topics.

https://doi.org/10.1371/journal.pone.0342436.t004

The interviews were conducted privately, either in a room or on Microsoft Teams, with only the patient and researcher present. Multiple interview strategies were used to explore cultural norms and encourage mutual understanding, such as reflexive listening, and direct or minimal encouragement [19]. The interviews were recorded and encrypted using the Philips Digital Pocket Memo device, and transferred using the Philips SpeechExec software. The audio files were transcribed verbatim, and deleted afterward. The transcriptions were anonymized. MG also took observational notes on the environment and choice of artwork during the art-based learning session. Demographic and clinical data were collected from the patients’ medical record.

Data analysis

The demographic and clinical data were analyzed using SPSS (v28.0.1.1 (15)). MG conducted a thematic analysis of the qualitative data in MAXQDA 2022 [20]. The constant comparative method was adopted by starting the analysis after six interviews [20,21]. We chose to start with a deductive analysis. Since we were looking for specific information regarding the exhibition and Art-Based Learning, we first selected relevant transcript segments based on the interview schedule topics before coding [21]. Within these topic segments, MG conducted an inductive analysis, using in vivo coding to stay close to the patients’ experience [20]. After this, the in vivo codes were clustered based on subject, and recoded into higher level codes. This formed the basis of our preliminary coding schedule. Each new interview transcript was analyzed sequentially using this schedule. New codes were added, clustered and recoded. This process continued until preliminary themes could be identified [21]. By adopting the constant comparative method, we could determine data saturation after thirteen interviews. The preliminary themes were then refined by cross-referencing with the original text and the topic segments until the definition of overarching, conceptual rich themes, which are presented in the result section [20]. The results are supported by quotes that highlight the nuances of each theme. We also aimed to include as many participants’ voices as possible.

Intersubjectivity

The interviews and analysis were performed by MG. The codes, grouping of the codes and assessment of the themes were regularly discussed with FC and HvL and reported by MG. The final definitions of the themes were reviewed by FC, HvL, MSR and GW in a team meeting in which suggestions were made and discussed until consensus was reached. Additionally, the findings were discussed with external researchers. Credibility was further enhanced through rapport building and ongoing contact with the participants. Member checking was omitted due to participants’ advanced cancer and vulnerability.

Research team and reflexivity

Impression of Art-Based Learning: enrichment

Even though some participants admitted initial skepticism, almost all of them reflected positively on their Art-Based Learning session. They described the experience as fun and inspiring by encountering something new and unexpected, such as new perspectives, insights or reflections about themselves or their situation. This could be understood as enrichment.

“At the very beginning, I was really standing there thinking, what am I supposed to do with this? […] Anyway, I actually had it right from the first piece that I thought, oh yes, this is going to go deeper.” (P1)

“I think I’m going to look at myself in the mirror for a while and see if I can discover more about myself.” (Po8)

“This really symbolizes, I think unconsciously, what has been on my mind.” (Po2)

Outreach: empathy and understanding

Regarding outreach, empathy and understanding were identified as a theme, meaning that health care providers and researchers should be aware of the participants’ vulnerable situation. This was also illustrated by the fact that even though most participants were positive about the outreach via the hospital, some felt the health care providers’ timing was off or that inclusion during a medical appointment was inappropriate.

“I say, [being ill] is a nightmare without sound. That’s where you are at, and then you are approached to participate.” (Po8)

Selection of artworks: variety

All participants expressed their appreciation for the selection of artworks, with variety being the key factor as illustrated by participants describing the different styles, media and genres represented. Additionally, even though some participants encountered artworks they did not connect with at all, in the end all participants were able to connect with an artwork, and experienced ‘being spoken to’ by their artwork of choice, which is characteristic of the Art-Based Learning method [14].

“I think it’s important to have variety, to make sure that people can choose something they like or find interesting.” (Po3)

The hospital location: presentation, accessibility, and living environment

Presentation was first identified as a theme, meaning that the presentation of the artworks mattered. Participants preferred the spacious and dynamic red and yellow routes, while the blue route through office spaces was seen as chilly, uninviting, and grey. This tied in with participants appreciating the lively, public atmosphere of the hospital, leading to the theme living environment, the hospital as an extension of society. Lastly, accessibility was also highlighted, with familiar surroundings reducing participation barriers, alongside practical concerns like parking and travel time.

“The surroundings keep changing. I found that very pleasant.” (P2)

“It is allowed in that place, where all kinds of things happen. Where people come with all kinds of emotions, who care about their own health, or their loved ones.” (P6)

The online museum: accessibility, use of technology and intangibility

For online participants, accessibility was an important theme too, as the online museum reduced physical effort and allowed participation from home. Furthermore, the use of technology was identified as a theme, discussed both positively and negatively. While it enabled remote access and preparation, some struggled with devices, mainly tablets, or navigating the platform. However, the facilitator’s quick adaptation to these issues was appreciated by those facing difficulties. Moreover, the online environment’s intangibility was an issue, as participants couldn’t gauge the scale of paintings, potentially reducing the experience’s impact. On-site participants also noted this after viewing the online museum.

“This is so nice if you are physically not able to go anywhere.” (Po7)

“I already visited the museum beforehand.” (Po2)

“Because of the size, a painting can also be impressive […], now you are looking at a picture, all in the same size.” (Po6)

Facilitation: personalization, and facilitator collaboration

All participants spoke positively about the facilitators. The facilitators were able to tailor the Art-Based Learning to the participants’ needs with step-by-step guidance and flexibility, which can be summarized as personalization. Participants also valued the facilitators active participation in the session, as it fostered collaboration, support and overall enhanced their experience with Art-Based Learning. This led to the theme of facilitator collaboration.

“I wasn’t finished after fifteen minutes […] I was very happy it wasn’t like, pens down, hora est.” (P5)

“The fact that [the facilitator] is doing the same exercise as you, only enhances the experience.” (P6)

Duration: feasibility

Most participants were satisfied with the duration of the session. Feasibility was identified as a theme. Table 4 shows that the median duration was 65 minutes, with outliers being 20 minutes online and 120 minutes on-site. While the set pace was experienced as positive, the facilitator also allowed participants to take more time if needed. This aligns with the theme of personalization.

“That’s an hour, that’s fine. If that’s feasible, then that’s fine.” (Po7)

Setting: privacy and group collaboration

Although most patients were positive about the individual sessions, some participants reported different preferences toward this setting of Art-Based Learning. Two preferences were identified: group collaboration and privacy. The first group preferred to work in a group, sharing experiences and empowering each other while also possibly lowering barriers to participate. The latter group preferred one on one session because of the intimacy, safety and being able to focus on oneself.

“Right now, I’m doing this for myself.” (Po7)

“In a small group, indeed […] I think with people in a similar situation. […] That is important to me, that way you can support each other in certain things.” (P3)

Participation: relevance and competence

Most participants were open to providing suggestions on the development of an exhibition, but not to co-creating. This related to relevance, illustrated by participants prioritizing other things in this phase of their life. Many also felt they lacked the necessary knowledge or skills, highlighting competence as key to participation.

“I just don’t want any obligations at the moment besides what I already do, let’s say hobbies.” (Po6)

“That really is a specialism, in my opinion (P3).”

An exhibition for Art-Based Learning: practical considerations and the importance of variety

Even though some participants had issues with the presentation of the artworks in the hospital, our results showed that the hospital is suitable for Art-Based Learning for multiple reasons. First, it was accessible because of its familiarity. Second, participants were appreciative of its living environment. These findings contradict a study by Lone et al. (2021), which created an in-house art gallery for inpatients to specifically provide a reflective space away from the hospital environment [7]. This contradiction may be due to the difference in patient populations, as outpatient participants may find it easier to distance themselves from the hospital environment than inpatients. Unfortunately, Lone et al. (2021) did not report on the reception of the gallery by the patient population [7].

If we focus on the online participants, we observed that they were particularly grateful for the possibility the online environment offered to participate in Art-Based Learning. Even though the use of technology posed some challenges for the participants, the facilitator was able to successfully address them. Additionally, the intangibility of the artworks could be an issue, although it is unclear whether this influenced the experience as a whole. Nevertheless, this suggests that accommodating an online experience could be a valuable addition to the on-site sessions for this particular patient population.

Interestingly, all participants were positive about the variety of artworks in the exhibition. Variety in the selection appeared to be an important consideration in other art-based methods as well [3,7,16]. Gore et al. (2022) showed that providing enough options for participants to choose from stimulated discussion on the patients’ situation mediated by the artwork [3]. The results suggest this could also be the case in our study. In addition, providing enough options could offer the participants opportunities to be spoken to by an artwork, to encounter something new or unexpected. Research has shown that such an encounter could open up new possibilities and new perspectives, possibly leading to transformation and consequently, meaning-making through narrative integration [22]. Further research is needed to investigate if, and how unexpected encounters in Art-Based Learning are related to such meaning-making processes.

Art-Based Learning in palliative care: call for a person-centered approach

Our results suggested that only minor adjustments are needed to adapt Art-Based Learning for the palliative care setting. First, we found a divide in participants either preferring individual sessions or in a group. This divide challenges us to rethink the setting in which we offer Art-Based Learning. Furthermore, the estimated duration of 45 minutes seemed too short. The median duration of 65 minutes suggests that a duration of approximately 60 minutes is more suitable. This is also supported by the qualitative data and the results from the pilot study from 2023 [15].

What seemed important in these suggestions for change, is the adaptation to the individuals’ needs. According to Payne (2008), responding to the patients’ needs should be a core principle of art-based methods in palliative care [23]. We identified multiple patient preferences and needs that pointed towards the importance of a so-called person-centered approach. This means that the individuals’ values and preferences should inform the shared decision-making and guide the care provided [24]. According to the World Health Organization, person-centered care is considered a key aspect of palliative care [25]. Starting with outreach, the results showed the importance empathy and understanding. Personalization was an important theme in the guidance, meaning that the facilitators were able to tailor the Art-Based Learning to the participants’ needs. This was also the case regarding the duration of the intervention. Even though the aim was 45 minutes, the facilitator adjusted the length of Art-Based Learning to the participant’s pace. Furthermore, looking at accessibility, we showed that it is important to understand what the patient needs. The results showed this could be practical in nature by providing parking spaces, but also facilitating an online environment to accommodate patients suffering with fatigue or other treatment related symptoms. These themes can be understood as essential elements for person-centered care [24]. These findings suggests that the themes we identified could provide a good starting point to guide further development of Art-Based Learning for patients with incurable cancer in palliative care.