Drawings about end-of-life issues: Analysis of pictures by children in Sweden during the 1st Covid-19 wave
Carol Tishelman1,2,3, Sofia Weiss Goitiandia1, Johanna Degen4, Andrea Kleeberg-Niepage4, Anna-Clara Rullander5, Max Kleijberg1,6
1Karolinska Institutet, Stockholm Sweden; 2Region Stockholm, SLSO, Sweden; 3End-of-life Research Group, Vrije University Brussels, Belgium; 4Europa-University of Flensburg, Flensburg, Germany; 5Umeå University, Umeå Sweden; 6Regional Cancer Centre, Stockholm-Gotland, Sweden
Background/Objectives: The Covid-19 pandemic and its containment measures significantly affected children. However, few studies gather data directly from children, instead relying on proxy reports from adults. Prior research noted children tended to be shielded from end of life (EoL)-related issues during the pandemic; however, death-related imagery was a notable part of children’s drawings from that time. We therefore explore the variation in depictions of EoL issues in drawings by children in Sweden during the 1st pandemic wave.
Design/Methods: In March 2020, the Swedish Archive of Children’s Art called upon children to submit artwork about their perceptions, feelings, and experiences during the Covid-19 pandemic. After examining all 1154 submissions, a transdisciplinary research team inductively conducted a serial analysis of all drawings with recognizable portrayals of EoL issues, i.e. sickness, care, dying, and death (n=172). The analysis was inspired by a phenomenographic approach, aiming to explore qualitatively different ways people conceptualize, experience, and understand various aspects of phenomena around them.
Results: We found 2 qualitatively different types of portrayals. The 1st type focuses on (re)actors in the pandemic, depicting the virus as an, often aggressive, active agent, while humans, including health professionals, are reactive, appearing passive and at a loss. Notably few drawings show nonprofessionals as active or as carers. The 2nd type of portrayal focuses on pandemic victims. The largest group by far depicts victims as unknown, e.g. as statistics or by unidentified graves. To a lesser degree, victims were depicted as known to the children, and a few children depicted themselves as victims, e.g. drawing their own gravestone.
Conclusions: Drawing supports a process of reflection, even about EoL-related issues. A subset of children appear aware of EoL issues, depicting questions, concerns, and fears, although those close to them seem not (yet) directly affected by Covid-19. Children appear to react to the powerlessness of adults, including professionals, which reflects the situation and discourse at the time. Instead of assuming children’s lack of awareness of EoL issues, it seems more constructive to address such issues in a child-centered manner and equip adults with necessary tools for communication.
Lessons of Life for School Children: What We can do to Increase Compassionate Individuals and Communities
Keiko Chida, Taketoshi Ozawa
End-of-Life Care Association of Japan, Japan
Background: The challenges faced by today's children include bullying, school refusal, self-harm, and suicide. It is not easy for school teachers to take care of children on their own. Different programs have been developed in different parts of Japan to convey the significance of life to children. The majority of them are led by individual trainers, and there are not many reports of systematic development of teaching materials, training of trainers, and classes.
Objectives: To demonstrate the way in which the Lessons of Life are established and implemented, so that children can comprehend and utilize the essence of spiritual care in their daily lives, which is cultivated in hospice and palliative care.
Design and Methods: The project was launched in 2018 as 'OK Project: The Lessons of Life'. The program was developed to aid children in comprehending the essence of spiritual care as conveyed to professionals. Lesson 1 is focused on acknowledging your resources through suffering, Lesson 2 is about what you can do when confronting those who suffer, and Lesson 3 is about affirming and valuing yourself. For children, three considerations were made (1) They were given familiar examples to personalize it by reflecting on past experiences. (2) Through the act of writing on the worksheet, they were able to clarify and visualize their personal resources. (3) An interactive format was used by the trainers to allow children to express their own ideas in an equal relationship. Trainers attempted to affirm children's remarks by saying 'you think so' even when they don't, regardless of their positive or negative tone. Through the interaction, the trainers themselves embodied the attitude so the children feel "I am glad to have someone who understands me".
Results: By December 2023, 203 trainers had been certified and delivered 490 classes to 60,098 participants. The reflection journal after classes showed a greater sense of self-affirmation and compassion for others. The reason for this achievement in such a short period of time is believed to be the improvement of easy-to-understand teaching materials, the development of a trainer certification system, support after trainer certification, and matching of schools and trainers.
Conclusion: It is believed that not only professionals should take care of children, but that children's mutual concern and support can lead to the formation of a compassionate community.
Normalizing death, grief, loss and care in a University of Applied Sciences community
Afke Tangenbergh, Marieke Groot, Erica Witkamp, Saskia Klinkenberg
Hogeschool Rotterdam
Background
Students and staff at Rotterdam University of Applied Sciences (RUAS) experience death, grief, loss, and care (DGLC). This often affects their work and study. The population of RUAS comprises 40,000 students and 4,000 staff members, a community in itself.
Objectives
Awareness, attention and compassion for experiences with DGLC within the RUAS community.
Design
An action research approach in which working towards change as well as developing knowledge is used on the way to a Compassionate University of Applied Sciences (C-UAS).
Methods
From 2021 on, actions were planned to address issues related to DGLC, focussing on students and employees. Monthly "drops" (small interventions) were performed, evaluated and continued or followed-up by new actions. We also held several interdisciplinary meetings to exchange on experiences concerning DGLC.
Results
The concept for the C-UAS was very well received by the Board of Directors.
Online dialogue sessions involving discussions with both students and staff were held, revealing that many students grapple with grief and loss. Interviews were conducted among staff regarding their experiences with DGLC in the workplace, highlighting an individualised need for attention at these subjects.
In a minor course on palliative care, students undertook an assignment on art and grief, interviewing fellow students on the subject. This resulted into a recommendation for the incorporation of art-based solace in RUAS.
Furthermore, various "drops" were implemented to draw attention to DGLC. These included the director's acknowledgment of grief and loss at the academic year opening; a table in the central hall featuring a journal for anyone to write about what matters, along with cards containing inspiring questions that passersby can answer; and posters focusing on DGLC. In “living room conversations” staff and students shared stories about DGLC; evaluation indicated that sharing personal experiences in a safe space at school and workplace, fulfilled a need to feel heard and understood, a practice they wish to continue.
We contributed to the film 'Connecting Communities – Inspiring perspectives on palliative care' by Agora and PZNL, launched during the 2023 EAPC World Congress. Amongst other initiatives, the film portrays the development of the C-UAS.
Conclusion
Our actions contribute to normalizing experiences, reducing taboos, and raising awareness about DGLC in the daily lives of students and staff in our RUAS community.
Using narrative data to engage young adults in conversations about dying and death
Kristina Alexis Smith1, Susan Law2, Philippe Blanchard3, Kim Widger2, Kelli Stajduhar1
1University of Victoria; 2University of Toronto; 3Ontario College of Art and Design University
Background: Denial and cultural silence around dying and death are significant social issues of our time, and the impact on young adults has been greater than for other groups. ‘Death literacy’ has emerged as a field within a larger education movement to support individuals, health and social professionals and the public more broadly through awareness, understanding and dialogue. Death literacy encompasses cultivating the knowledge and skills to access, understand, and act upon end-of-life and death care options. Creative strategies, such as arts-based approaches, may be particularly relevant to the needs of young adults, yet research has been limited to date. Objectives: The aim of this knowledge translation project was to translate existing illness and palliative care narrative data using arts-based approaches into animation and other arts forms as a way to emotionally engage with young adults on this topic and consider creative products within future educational initiatives. Design and Methods: We co-designed a pilot course for undergraduate art and design students, involving researchers, students and faculty, to explore arts-based approaches to understanding narrative, palliative care qualitative data. The data came from Smith’s narrative ethnographic PhD research – an investigation of the experiences of families waiting for a transplant for their child or receiving palliative care, as well as the experiences of their healthcare providers. Selected, anonymized text (focused on empathy, illness, suffering, and death-related themes) from 145 journal entries of 18 healthcare providers was used in the pilot course. Four students enrolled and worked with this material to create different arts-based forms (e.g., collages/moodboards, sketches, digital drawings, sequential narratives/storyboards, journey mapping). Students were guided to select moments, emotions, and feeling states to reflect in their artwork. Results: Apart from the arts-based products, we learned that the young adult students were open to talking about concepts of dying and death and wanted to engage further in this type of knowledge creation around sensitive health topics. On this basis, we developed a proposal for deeper exploration of art-based approaches to enhance death literacy in young adults. Conclusion: We contribute creative ways of compassionately and emotionally engaging young adults to support communication about dying and death and other sensitive health topics.
Evaluation of the teacher training phase of the School Bereavement Programme in Northern Ireland
Jodie Adele Crooks1, Joan McEwan1, Christine Irvine1, Katarzyna Patynowska1, Austin Orr1, Tracey McConnell1,2, Giles Skerry1, Susannah Baines1
1Marie Curie, United Kingdom; 2School of Nursing and Midwifery, Queen's University Belfast, United Kingdom
Background: Northern Ireland (NI) demonstrates a comparatively low level of engagement in addressing and discussing matters related to death and dying. This occurs even though approximately 1,600 children are bereaved of a parent/carer each year in NI - at least 1 child in every classroom. There is growing evidence that avoiding this subject with children can increase the risk of poor mental and physical health, yet half of children had not received support from their school or college after a bereavement. Marie Curie, a leading end-of-life care charity in the UK, partnered with Cruse Bereavement Support charity to fill this gap in NI through a school bereavement training programme focussed on equipping teachers to support children in the educational setting.
Objectives: To examine the impact of the school bereavement training on the confidence and knowledge of the teaching staff, impact on pupils, changes in school policy and practice since the training, and the barriers and enablers of impact.
Design: Mixed-methods service evaluation comprising a survey and semi-structured interviews.
Methods: Nineteen qualitative interviews with teaching staff (of children aged 4 – 16), plus five bereavement trainers. Interviews were analysed using reflexive thematic analysis, building on themes identified in an earlier pilot phase of the training. Pre-post training survey results will be analysed using a Mann-Whitney U test for significance.
Results: The training programme was attended by 372 teachers from primary and secondary schools across Northern Ireland. Reflexive thematic analysis highlights that teaching staffs’ confidence, knowledge and ability to support pupils increased post-training. The bereavement training helped to break down social taboos around talking about death and dying, including supporting the prioritisation of grief within the school ethos. Examples of shared learning, changes to practice and policy development and improvement were given. Statistical analysis is underway at the point of submission.
Conclusions: Training teachers to support children aged 4-16 in the school environment who have experienced loss and bereavement had positive outcomes for both teaching staff and pupils. Greater investment and rollout of such training has clear benefits, and could impact wider policy, guidelines and prioritisation of grief education within the school curriculum in Northern Ireland and beyond.
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