A Research Project by Dennis Wilke
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