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ABSTRACT
Drawing upon ethnographic fieldwork in a Danish pediatric oncology ward we explore how children – as cancer patients – respond to the time constraints of cancer treatment that may save their lives but simultaneously hold them under a spell of time. Children respond through practices of what we have called “tinkering with time,” which enable them to seize control not of life, but of time. We suggest that tinkering be understood as time work through which children mold their experience of the constraints of time. We regard this as an expression of existential agency that simultaneously sustains children’s sense of autonomy.
Acknowledgments
We are grateful to the pediatric oncology ward’s management for giving formal consent to Løvschal-Nielsen to conduct ethnographic fieldwork and research on the ward. We also thank members of staff, who kindly shared their time, experiences and knowledge of cancer treatment and caring for children with cancer. In particular, we would like to thank the participating children and family members, who generously shared time, experiences and thoughts about being seriously ill and in cancer treatment. Finally, we thank the three anonymous reviewers and Medical Anthropology’s two co-editors, Dr Rebecca Marsland and Dr James Staples for their inspiring comments and feedback on drafts of this article.
Disclosure statement
No potential conflict of interest was reported by the author(s).
Notes
1. In Danish, “Denne her gang gi’r jeg mig ikke!”
2. This means that the differences between the doctors’, physiotherapists’, nurses’ and family members’ tinkering and possible struggles with time remain backstage in this article.
3. According to the psychologist, Bearison, this rarity has also made death in childhood a private event and experience (Bearison Citation2012).
4. Some children even chose to disengage socially from care (Løvschal-Nielsen et al. Citation2016).
5. This does not mean that the children could not or did not reflect on their situation at other times. Additionally, referring to Gallacher and Gallagher (Citation2008), children resisting research techniques may be viewed as forms of action.
6. Before Løvschal-Nielsen embarked on the fieldwork, the clinical management of the pediatric ward had granted her formal permission to do ethnographic fieldwork in its isolation unit. The project proposal underwent a research authorization procedure that was approved by a Danish ethics review board, and law enforcement issued a “child protection certificate” – a formal national clearance – that permitted Løvschal-Nielsen to work with children.
7. Most families and staff were ethnic Danes. The children, co-admitted family caregivers, and staff represented a wide range of socio-economic backgrounds. Names are anonymized.
8. In a hospital ward, an ethnographer’s participation has its limits, and therefore Løvschal-Nielsen never undertook any clinical tasks, and accepted that clinical practices took precedence over her fieldwork.
9. Among the studies were Gatta et al. (Citation2000), and Jensen et al. (Citation2004)
10. Evidence for the role of time for improving the success of treatment and chance of survival is conflicted in scientific circles (Tørring Citation2014:26).
11. In the ward, infections were the temporal jokers in the pack. They had to be treated immediately, and therefore could lead to canceled appointments and schedules, from one minute to another, leading to rushes and spiraling delays.
12. Chemotherapy is hard on children’s bones.
13. Because children with cancer tend to have very little appetite, it is important to meet any appetite. Therefore, the unit had a large supply of children’s favorite foods in a storeroom, accessible to all admitted children and family caregivers, night and day, making it possible for children to eat whenever they were hungry and felt like eating. In Ida’s case, the ice cream had a different purpose – or perhaps not.
14. In Danish, “Tror I virkelig, at jeg vil ta’ den medicin, der gør mig syg, gi’r mig mavepine og en allergisk reaktion?”
15. A nurse stated that inviting children to count when a nurse gave an injection would usually would make children relax a little. She also noted that one should never forget to emphasize, “count to three,” because otherwise children might count to thousand if they felt like it.
16. In Danish, “Ok – nu er jeg parat til at blive syg, få mavepine og en allergisk reaktion.”
17. In Danish, “Emma er en spillefugl.”
Additional information
Funding
Notes on contributors
Pia Løvschal-Nielsen
Pia Løvschal-Nielsen is an anthropologist and PhD from the Department of Anthropology, Aarhus University, Denmark. Her thesis on children in cancer treatment included ethnographic fieldwork on a pediatric oncology ward in Denmark. She has also conducted ethnographic fieldwork on childhood and social learning in a religious commune in Canada.
Rikke Sand Andersen
Rikke Sand Andersen is an anthropologist, and professor WSR at Research Unit of General Practice, University of Southern Denmark, Denmark, and Department of Anthropology, Aarhus University, Denmark. From 2011-2019, Andersen led an anthropological research group at an interdisciplinary research center (CaP) at Aarhus University, exploring ongoing changes in cancer control. She is currently PI on a research project on state–family relations, exploring how notions of solitude and relatedness may be understood through the cancer diseased body (ALONE). Her main fields of research are the body in cancer politics and care, and family medicine.
Lotte Meinert
Lotte Meinert is an anthropologist, and professor at the Department of Anthropology, Aarhus University, Denmark. She has conducted anthropological fieldwork in various parts of Uganda for a total of more than seven years, and has also done shorter periods of fieldwork in Indonesia and Kenya. Her main fields of research are medical anthropology, education and human security.