We’re delighted to present this month’s ‘Editor’s Choice’ from Palliative Medicine, the official research journal of the EAPC. You can read the longer article in Palliative Medicine which EAPC members can access free from the EAPC website. Maaike Haan is a PhD student at Radboudumc in Nijmegen, The Netherlands, whose research looks at family caregiving in the last phase of life and on its visualisation in comic art for education and support.
Everywhere I show our graphic novel, people are positively surprised. Comics? In palliative care? Yes! To make the public outside academia more aware of family caregiver’s needs and moral dilemmas, we developed the 230-page Dutch graphic novel ‘Naasten’ (meaning ‘loved ones’ or ‘caregivers’ in English). My PhD supervisors, comics lovers themselves with bookshelves full of wonderful new worlds, were inspired by the idea that comics offer a window into the subjective lives of others. The combination of words and images allows comics to show what an experience feels like, enabling readers to better understand certain illness or caretaking experiences – perhaps more than written text can. Our comic book, specifically, shows what it can mean to take care of a partner or another family member who is terminally ill. Two storylines were scripted based on our in-depth interview research and, of course, the artists’ imagination and creativity – it was a privilege to work with comic artists Melanie Kranenburg and Niek van Ooijen on this project.
What we noticed is that the black-and-white pictures drew the most attention. ‘Horrible’, some people exclaimed, and ‘way too confrontational for families’. ‘Beautiful’, others stated, and ‘showing what palliative care really looks like’. I can imagine both these worries and appreciations. When I started my PhD project, I felt little acquainted with the comics medium and was almost intuitively drawn to softer tones and a bit scared-off by all too harsh drawings. But, along the way of my research, and having read multiple other comics and graphic novels, I am getting to know, understand and appreciate this world of comics better and better. It is such a powerful medium, with a remarkable talent to show lived experiences and make you feel like you were there. But, given this power, comics can simultaneously be quite direct, emotional, and therefore confrontational.
This ambivalence was also shown by our qualitative research findings. To investigate barriers and facilitators in using the graphic novel as a conversation aid in supporting family caregivers, we conducted training sessions, follow-up conversations and three evaluative focus groups. Participants included palliative care professionals and volunteers supporting those with palliative care needs who used the book in diverse ways in their contact with family caregivers. We also interviewed individual family caregivers to whom the book was presented by these healthcare professionals and volunteers. The respondents thought Naasten was recognisable, raised emotions, awareness and (in-depth) conversations, and could support bereaved caregivers; but the book was also reported to be potentially harmful due to its emotional impact, too directive in the conversation, or superfluous. We concluded that we should use comics carefully. Especially in contacts with currently caring family members, we would advise everyone to assure a right fit between the comic and what the family caregiver is or was experiencing; to gauge whether the family member has any affinity with the comics medium; to carefully introduce the book and offer a follow-up; and to make sure the conversation is directed by the family member.
In any case, and perhaps more than directly with patients and their families, our respondents suggested that comics could be used in an educational setting. It was also our experience that seemingly simple questions can evoke lots of conversations and thought. Just show a page or image to your colleagues, students or other healthcare professionals, and invite them to discuss together: what do you see? What does this image evoke? What does this image tell you about family caregiving, and about caregivers’ moral dilemmas and values? And what do you gain from this for your daily practice? In this way, discussing comics together may contribute to professional education and awareness, possibly more sensitivity for family caregivers’ needs, and thus tailored support. We hope to further investigate this educational value of our graphic novel in training settings.
Curious? Please have a look at some images of our book as shown in Supplemental File 1 of our original article.
READ THE FULL ARTICLE IN ‘PALLIATIVE MEDICINE’
We hope you’ll read the longer article in ‘Palliative Medicine’ – EAPC members can access a FREE copy from the EAPC website. ‘Facilitators and barriers in using comics to support family caregivers of patients receiving palliative care at home: A qualitative study’ by Maaike M Haan , Jelle LP van Gurp, Marjan Knippenberg and Gert Olthuis. First Published: Palliative Medicine, Volume: 36 issue: 6, page(s): 994-1005.
Images below from ‘Naasten’ of Geert caring for his wife and Eva caring for her father. ©Kranenburg, Van Ooijen & Haan (2019).
Links and resources
- To find out more about this project, click here.
- Haan, M. M., van Gurp, J. L., Knippenberg, M., & Olthuis, G. (2022). ‘Facilitators and barriers in using comics to support family caregivers of patients receiving palliative care at home: A qualitative study’. Palliative Medicine, 36(6), 994–1005.
- Haan, M.M., Olthuis, G. & van Gurp, J.L.P (2021). ‘Feeling called to care: a qualitative interview study on normativity in family caregivers’ experiences in Dutch home settings in a palliative care context’. BMC Palliative Care, 20, 183 (2021).
- Read Palliative Medicine Editor’s Choice posts on the EAPC blog.
- Follow Palliative Medicine on Twitter @palliativemedj.
About the author
Maaike Haan (1988) is a PhD student at the IQ Scientific Center for Quality of Healthcare, Radboud University Medical Center, in Nijmegen, the Netherlands. She has a background in pedagogical sciences and philosophy of behavioral sciences and she did a postdoctoral program in ethics of healthcare. She also works for the ethics committee of an elderly care institution. ORCID: 0000-0001-8430-2564.
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