Dennis Wilke – Situational illness experiences of children and adolescents with cancer. An ethnographic study

Project outline

Through biomedical progress, survival rates and five-year survival prognoses of children and adolescents with cancer have increased significantly in the course of the 20th century [1]. The facts that childhood cancer has become a treatable illness and that great strides were made in psychosocial care too, raise questions concerning the lived experience of these children. However, the quality of these experiences and their meaning for these children have long been neglected in research (with some exceptions [2]): psychological and thereby quantitative, standardized approaches were predominant, and studies tended to conduct adult-centered research focusing on the perspectives of parents and/or professionals (on the children’s illness experience) [3; 4]. This applies both for research with children with life-threatening illness as well as for research with children with life-limiting illness.

Since a few years, researchers from different disciplines have increasingly emphasized the need for qualitative (longitudinal) studies which include children‘s own perspectives and which focus on their illness experience [5; 6]. Some of these studies explicitly take up ideas from the interdisciplinary field of “New Childhood Studies”, which have (among other conceptual advances) argued to consider children as agents who are actively involved in the construction of their own lifeworlds and should hence be included in research [7]. Participation in research might serve as a positive resource for these children and their families [8; 9].

The project draws upon these impulses and aims at conducting an ethnographic study on the illness experience of children and adolescents with cancer. Ethnographic field research can be especially suited to study illness experiences, as it focuses experience as a processual phenomenon in its emergence, as it emphasizes the necessity of reflexivity and relationships of trust (both of which are essential in sensitive research contexts), and as it integrates different types of data (which can be crucial to studying experiences which partially defy verbalization, as in the case of children’s illness experiences) [10; 11].

With this ethnographic and thereby explorative approach, the project asks how children and adolescents experience their illness, treatment, care and their lifeworld(s) – but also their life beyond illness. What is yet to be worked out is the relevance of the concept of “situation” or situational analyses [12] for this project, as its title implies. Which situations in children’s disease and treatment processes are particularly formative for their overarching illness experience? How do children come to their own interpretations and “constructions” of meaning regarding certain situations and topics in their course of illness – and what how are these meanings constituted on the level of sociality? How do children experience “limit situations” or the existential dimensions of an illness experience and how can these be considered adequately in research, both on a theoretical and on a methodological level [13]?

The project applies a phenomenological perspective in order to frame these questions and topics adequately. Phenomenological approaches can be particularly suitable for studying illness experiences, as they emphasise the relevance of, and aim to study human experience from the first person point of view. Consequently, phenomenology has always dealt with many of the topics that are relevant in this project, such as corporeality, vulnerability and temporality [14].

In addition to these questions, the project has a strong methodological focus. In reference to the discourse on the feasibility of social-scientific research (with children) in health care settings [15], it asks how such research can actually be conducted and aims at contributing to the further development of relevant methodologies.

Author: Dennis Wilke

References

[1] Deutsches Kinderkrebsregister, Kompetenznetz Pädiatrische Onkologie und Hämatologie (KPOH) (2019): Figure: Anstieg der Überlebensraten in Deutschland. As cited in: https://www.kinderkrebsinfo.de/fachinformationen/paediatrische_onkologie/index_ger.html,  accessed June 29, 2020

[2] Bluebond-Langner, Myra (1978): The Private Worlds of Dying Children. Princeton: Princeton University Press

[3] Woodgate, Roberta L. (2000): Part II. A critical review of qualitative research related to children's experiences with cancer. Journal of pediatric oncology nursing: official journal of the Association of Pediatric Oncology Nurses 17 (4), 207–228

[4] Oetting-Roß, Claudia; Schnepp, Wilfried; Büscher, Andreas (2014): Die Perspektive lebenslimitierend erkrankter Kinder und Jugendlicher in der Forschung zur pädiatrischen Palliativversorgung – ein Literaturreview. Zeitschrift für Palliativmedizin 15 (4), 166–173

[5] Ohlbrecht, Heike; Peter, Claudia (2018): Gesundheit und Krankheit bei Kindern und Jugendlichen. In: Andreas Lange, Herwig Reiter, Sabina Schutter und Christine Steiner (Eds.): Handbuch Kindheits- und Jugendsoziologie. Mit 28 Abbildungen und 12 Tabellen. Wiesbaden: Springer VS, 569–592

[6] Ghirotto, Luca; Busani, Elena; Salvati, Michela; Di Marco, Valeria; Caldarelli, Valeria; Artioli, Giovanna (2018): Researching children's perspectives in pediatric palliative care. A systematic review and meta-summary of qualitative research. Palliative and Supportive Care, 1–12

[7] Oetting-Roß, Claudia; Ullrich, Charlotte; Schnepp, Wilfried; Büscher, Andreas (2016): Qualitative Forschung mit lebenslimitierend erkrankten Kindern und Jugendlichen: Hören wir richtig hin? Forum Qualitative Sozialforschung / Forum: Qualitative Social Research 17 (2), 46 paragraphs

[8] Woodgate, Roberta L.; Tennent, Pauline; Zurba, Melanie (2017): Navigating Ethical Challenges in Qualitative Research With Children and Youth Through Sustaining Mindful Presence. International Journal of Qualitative Methods 16 (1), 1-11

[9] Boles, Jessika; Daniels, Sarah (2019): Researching the Experiences of Children with Cancer. Considerations for Practice. Children 6 (93)

[10] Carnevale, Franco A.; Macdonald, Mary Ellen; Bluebond-Langner, Myra; McKeever, Patricia (2008): Using participant observation in pediatric health care settings. Ethical challenges and solutions. Journal of Child Health Care 12 (1), 18–32

[11] Peter, Claudia (2016): Forschungssituationen als forschend-erspürende Situationen? Zu situativen Möglichkeiten, als Forscherin sensible Daten zu erhalten. In: Ronald Hitzler, Simone Kreher, Angelika Poferl und Norbert Schröer (Eds.): Old School - New School? Zur Frage der Optimierung ethnographischer Datengenerierung. Essen: Oldib Verlag, 193–212

[12] Clarke, Adele E.; Friese, Carrie; Washburn, Rachel (2018): Situational analysis. Grounded theory after the interpretive turn. Los Angeles, London, New Delhi, Singapore: SAGE

[13] Feith, Dominik; Peter, Claudia; Rehbock, Theda; Tiesmeyer, Karin (2020): Grenzsituationen. Qualitative Forschung zu existenziellen Krankheitserfahrungen und Therapieentscheidungen. In: Netzwerk Qualitative Gesundheitsforschung (Ed.): Perspektiven qualitativer Gesundheitsforschung. Weinheim: Beltz Juventa, 216-269

[14] Carel, Havi (2016): Phenomenology of illness. Oxford: Oxford University Press

[15] Coyne, Imelda; Hayes, Eilis; Gallagher, Pamela (2009): Research With Hospitalized Children. Ethical, methodological and organizational challenges. Childhood 16 (3), 413–429