Patient characteristics

During round A six patients were interviewed (Table 3). The conversations lasted 5–62 min (mean 31 min). One participant ended the interview early as he experienced that his language proficiency was not sufficient for the interview. Round B was performed with 15 participants (Table 4) and lasted 12–52 min (mean 31 min).

All six patients of the primary phase of the study lived with advanced cancer and were included consecutively. Demographic characteristics of included patients were as follows: 1 woman, 5 men; median age 67 years (range 51–88 years). During the main phase of the study and data collection 15 interviews were conducted with different patients than those in the first phase. In round B, eight participants were female, seven were male. Patients were again included consecutively, 14 patients lived with advanced cancer and 1 with progressive gastrointestinal disease. The median age range of this group was 69 years (range 58–89 years). Of the 21 interviews 2 were conducted in the presence of the caregivers (P05A, P15B).

These results are presented and analyzed in this article. The participants of the interviews from round A are marked with the letter A (e.g., P01A for the interview with patient 1), whereby interviews from round B are marked with the suffix B (e.g., P01B is a different person than P01A). An overview of all interviews conducted can be found in Tables 3 and 4.

Co-creation of the comic

The main results of the first interview phase (round A) shed light on topics that patients found important regarding PC. These topics can be summarized as fear, ignorance, difficulties in explaining the term, characteristics of PC as a medical scientific specialty, and PC as something positive and free from pressure.

Four patients reported from their own experience that they felt frightened when they heard about the possibility of being admitted to the PC unit (P01A, P02A, P05A, P06A). For example, patients who recalled the moment when they were confronted with the possibility of being admitted to the PC unit shared in the interviews “Ok, shock (voice breaking). But obvious from the physical condition (cries)” (P02A) and “(t)he first time I heard this; I naturally thought it was an expression for the beginning of the end. So, an accompaniment (…) into death. (…) It scared me at the time because it was a wake-up call, ‘hello, you’re on your way’” (P06A).

However, during the interview, this initial trepidation was no longer prevalent in any of the patients. Instead, they associated PC with positive experiences. Four of the six interviewees found answers to the question of how they would inform their roommates or relatives about PC. However, P01A stated that he found it challenging to explain what it was about. Similarly, P05A found it “difficult to convey the message of ‘you’re on your final path’”, P02A described PC as improving the situation to such an extent that life becomes worth living again and P06A found it to be “a great help”.

Subsequently, patient quotes and the main topics from interview round A were reflected on by the research team and illustrated by SM in the form of the comic booklet A Graphic Guide to Palliative Care (Figs. 1 and 2). The content was supplemented with important aspects related to the authors’ clinical experience in PC, such as the origin of the word “palliative” and historical information about the field. For example, information on Cicely Saunders, the pioneer of palliative care and a former doctor, social worker and nurse was added. Additionally, open-ended questions and opportunities for creative expression were included to encourage patient engagement. The authors created both English and German versions.

Qualitative findingsTheme 1: patients’ experiences with and understanding of the graphic material on PC Initial associations with comics and triggered feelings

Nearly all patients reported having read comics before and expressed a positive attitude towards this medium. Many mentioned enjoying comics during their childhood and youth, citing examples such as Mickey Mouse, Fix and Foxi, or Asterix and Obelix.

The comic material elicited various emotional reactions. Some patients quickly flipped through it and put it away (P13B), which might suggest a lack of interest or defense against emotions that the content triggered. Others expressed being deeply moved by certain passages (P01B). Some disagreed with parts of the content (P03B), while others either cried (P04B) or laughed (P09B). Many patients later verbalized their emotions. Patient P13B nodded to the question whether it made her sad, and confirmed by stating, “In a way, yes... It’s not funny” and P11B also found the booklet “depressing”. In contrast, P07B smiled while reading and P04B had tears running down her face at one point, but ultimately concluded that it made her “feel lighthearted”: “cheering up, yes, ultimately it was mostly funny”.

Positive and critical evaluation

Most of the patients expressed appreciation for the project, asked to keep the comic, or requested additional copies for their loved ones. Also, P01B stated “this is the best thing I’ve heard in the last 20 years. You’re definitely hitting the mark with this activity”. It is noteworthy that readers frequently had a positive reaction when they recognized themselves or their experiences in the brochure. Reactions included: “yes, yes that’s true” (P02B, regarding page 9 and more time on a PCU); or “that’s also difficult for me” (P03B, regarding page 11/12 on grief and loss). P01B found the image of the coat appropriate and noted feeling protected in the PC unit. P10B exclaimed: “this is so close to reality, (…) with how time passes, with the clock there”. Above all, it was mentioned repeatedly that the booklet had a very informative character and that the content was of importance (e.g., P04B, P07B).

Patients expressed the benefits of visual communication in the booklet. For one participant, the comic made information “concise and crisp” (P07B). Others reiterated that the combination of text and images has also led to a better understanding (e.g., P10B). According to P11B, the images provided greater clarity as he felt they were more concrete than language. P13B confirmed that the images conveyed more than text alone. P09B agreed to prefer pictures over reading lengthy text, saying simply, “I am a picture person.” The use of images and metaphors had recently helped this patient understand her medical condition. She shared that a doctor had used an analogy to explain the consequences of her tumor in her abdomen like a blocked street inside her: “and for me it’s much easier to understand than if he somehow explained it to me medically”. P11B summarized the potential for art to serve as a means of self-expression and articulation, regardless of the medium.

The patients also provided strong opinions on what they would change in the comic. P11B pointed out that an important aspect of patient care was missing: “The most important message of this comic should be that the focus is not on the illness, but on the person, the patient”. P03B found it difficult that end of life was mentioned and expressed that the authors should be careful with such wording. He stated, “If someone doesn’t know that now or doesn’t know it at all, then they might think they’re going to die here”.

Another piece of critical feedback came from a patient and former internist who was skeptical about the effectiveness of graphic material. He stated, “I believe that a conversation is much more important. I am convinced of this and would never choose a comic to explain things to patients. Instead, I would sit down with them and try to make them understand to the best of my knowledge and ability” (P12B). He added that comics can lack direct interaction, which was crucial for understanding patients’ reactions. Patient 19B agreed that conversation is preferable to reading a comic alone. The participant expressed difficulty in her reading literacy and emphasized the importance of verbal communication.

The feedback included critical remarks about specific images (P14B), the use of certain colors (P01B, P04B, P06B, P15B), and the use of gender-inclusive language within the German version (P14B, P03B). Additional feedback indicated that humor was important (P04B), while also noting that the comic lacked humor and was too serious (P05B).

Difficulties to understand

During the interviews it became evident that certain patients had difficulty comprehending the intended meaning of the booklet. This was due to certain ambiguous visual representations, such as interpreting the spiral on the title page with a washing machine (P02B) or across sections that lacked clarity in reading the text. For example, P08B asked: “Can you tell me what ‘palliative’ is? I don’t know the word, I’ll tell you now. And what does it mean?” Additionally, the metaphor of the elephant in the room (page 14), which was intended to stand for a problem that is not openly expressed, at times caused confusion among participants (e.g., P11B), as the English expression “an elephant in the room” does not exist in German. However, the image was interpreted in many different ways (e.g., death, transitioning to another world, family).

Theme 2: patients’ perceptions of the possibilities for use of the comic

The patients provided their input on potential uses for the visual information material. Additionally, the conversations themselves revealed additional potential areas of application.

Possible target groups and early education/information

During the interviews the topic of the target audience was raised. P07B expressed uncertainty about which age group was the intended group to be addressed with the material. She proposed: “I believe that the generation who should be addressed have a sick grandmother or who have a cancer patient in the family. So, I think young people don’t even know what PC means. I’ve also seen it with my sister-in-law, I just said PC and she was terrified. I said, ‘Why?’ ‘Well, that’s where people go to die’. I say, ‘Well, people don’t go there to die’.” Additionally, other respondents suggested children as a potential target audience. P14B viewed the comic as an attempt to explain PC in an “understandable way that children can also understand.”

Patients reported being uninformed about certain aspects of the material and found it informative (e.g., P02B). P07B believed it was important for the general population to read it because they did not deal with death enough. Others saw the benefits primarily for those affected personally. P02B found it “incredibly helpful” and “relieving” as it got to the heart of the matter.

Reducing anxiety and starting a conversation

Interviewees saw the use of visuals as being effective in reducing anxiety related to PC. P01B explained that she felt she recognized herself in her fear through the comic, which helped to reduce it. P02B believed that it could benefit others who experience anxiety about entering the PC unit. P04B expressed that the comic could have been helpful earlier in her illness: “It may have avoided the anxiety to some extent or addressed it earlier because at one point you have to deal with it.”

The comic was successful at initiating conversations about PC. The interviews showed how the visual material facilitated interactions and that the participants themselves began to ask the interviewer questions. For example, one patient was very pleased to read that a study had shown that patients treated with PC lived longer, and when he encountered Cicely Saunders in the text, he immediately asked, “How old did she get?” (P02B).

A key finding was that the material proved useful for talking about topics for which words are sometimes lacking. Specifically, multiple participants found the pages on grief to be particularly helpful. P01B admitted that while she might not have brought up the topic on her own, she believed the page on grief was important and had personal experience with it: “I also think grief is quite valid.” Additionally, participants emphasized the importance of discussing death and dying (P06B) rather than the tendency to avoid the topic altogether (P04B).

It was also noteworthy that nearly all participants emphasized the potential use of comics to discuss what PC means with their loved ones. Some requested additional printed comics to share with specific individuals, such as their partner, sister or son (P01B, P08B). P04B summarized the topic:

“It’s not that you’re burdened with it yourself, it’s more the relatives who are burdened. (…) I think that PC should be primarily focused on the relatives of the patient. This is because, (…) when one is ill, it is inevitable that one will eventually die. (…) I have found that I am better able to cope with this knowledge than my relatives.”

Ultimately, participants suggested that the comic could provide needed information for family and friends and create an introduction to difficult conversations.

Theme 3: how the visual material facilitated access to the patients’ shared imagination and interpretations

The process of reviewing the information material together with the patients yielded another unexpected insight. The visual material facilitated access to personal aspects of the participants as it enabled the observation of their own power of imagination.

It was enlightening to read the material directly to patients or with participants, who could then highlight certain pages or point to images. As patient and interviewer sat together, the joint viewing enabled the observation that participants occasionally perceived the images in a manner that differed from the intended meaning. While sharing their associations of looking at the drawings, they provided insight into the cognitive processes of being affected, revealing their inner worlds, their needs, all of which facilitated the discussion of previously unspoken or repressed topics, including hopes.

During the interviews, numerous associations with the drawings in the comic were offered. The visuals were enriched with various personal associations that held meaning for specific patients. For instance, P04B interpreted the small window (page 8) as her perspective on her own illness.

P04B: “The small window is so far away for me. That’s the way it is, but at some point, you have to deal with it”.

I: “What is the small window for you?”

P04B: “That little window, that little coat, it’s always so far away for me, in terms of the image now. But it’s this big coat that’s put over it again. And it has to be put over it one day, yes.”

I: “What does it have to be put over?”

P04B: “Over the illness. So, you have to deal with it at some point. (…) That’s how a protective layer is created over it.”

I: “And what’s further away from the small window?”

P04B: “Well, the protection, the acceptance that it’s there now, the acceptance that the illness is there.”

This example and similar statements indicated a profound, emotional, spiritual, and imaginative engagement with the educational material. Speaking on the experience of imagination, P11B stated:

“So, if I have a reader, for example, who has a lot of imagination (…), then I don’t need a lot of images to take them on a journey. I mean, of course it can always happen that they (…) then end up somewhere completely different to where I, as the author, think they should be. Of course, it could be that he’s taken such a wrong turn in his imagination that I didn’t even think it was a possibility.”

He thus indicated that the given texts and images met the patients’ individual imaginations and that authors could not know nor plan where the material would take the reader mentally.