McAnulty College and Graduate School of Liberal Arts
Russell A. Walsh
Previous studies concerning children living with illness have been limited by (a) a narrow focus on the child's cognitive development, (b) reliance on sources outside of the child's experience, (c) reliance on methods based on the language and quantitative modes of measuring used by adults rather than the experience of the child, (d) models that emphasize methods of control in coping, and (e) a tendency to pathologize the responses of the child.
In contrast, the current study involved speaking directly with school-aged children living with a diagnosis of cancer. The qualitative method developed for this study involved a two-fold approach, coupling drawings with interviews. This approach involved participants in a natural activity that allowed them to "open up" by showing their world, and then narrating the story "behind" the pictures. This approach led to significantly more elaboration and attention to their individual experiences.
Recommendations are made for using the method of combining drawings and interviews both in research and in the ongoing care of children living with illness. Results indicate that these children do not fundamentally identify themselves with having cancer, describing themselves as "normal" kids, rather than as "patients." Participants described varying ways of "getting through the tough times," including distraction and the support of family and friends. Most participants identified the "worst" part of having cancer concretely in terms of painful procedures or the unfamiliar environment of the hospital. Though participants dreaded painful procedures, each spoke of the care with which they were treated by the doctors and nurses who performed them. Participants sought to give meaning to their painful present and uncertain future by strengthening relationships or seeking to use their experience to help others. The prevailing metaphor in current literature portrays the patient and doctor as soldier and general engaged in battle. Here a new metaphor is introduced involving medical staff as guides who lend their expertise in leading patients along an uncertain and often treacherous path. In this new metaphor, patients are not abandoned if they begin to "lose the fight," but are instead guided through to the end of their journey.
Novinski, K. (2003). Living with Life-threatening Illness: An Inquiry into Children's Experience of Cancer (Doctoral dissertation, Duquesne University). Retrieved from https://dsc.duq.edu/etd/987