Talk
Experiences in pediatric oncology: the Clown Doctors? perspective regarding the needs, difficulties and concerns of children/adolescents with cancer.
Ana Sofia Melo (Melo, A.); Susana Caires (Caires, S.); Patrícia Arriaga (Arriaga, P.);
Event Title
1st International Conference on Pediatric Hospital Clown: reflections on research and training
Year (definitive publication)
2014
Language
English
Country
Italy
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Abstract
Cancer affects pediatric patients and families in various ways, and demand enormous efforts to adapt to the disease and its? prolonged treatment(s). Many studies have been carried out until these days, in an attempt to map the psychosocial impact of cancer in oncological children/adolescents. Such studies have essentially considered parents?, pediatric patients? (including "survivors") and healthcare staff?s viewpoint. That means that, until now, the perspective of one of the most recent professionals working in the oncology pediatric wards has not been listened to: the Hospital Clowns? (HCs). Although not incorporating the professional team that daily assists the pediatric patient, the HCs are also active participants and care agents, bringing into the hospital a new language and forms of expression, as well as alternative lenses to look at healthcare phenomena such as disease, suffering, communication or death. That way, HCs somehow breed an additional way to look at, feel and live the oncological disease and all its? adjacent phenomena. In an attempt to disclose the gaze of these professionals regarding the phenomenological dimension of cancer amongst its protagonists, the authors led a qualitative exploratory study where the clowns? perspective has been the focus. The study was developed with a small group of clowns (n=8), and three focus-groups were run. A semi-structured interview was used and it concentrated on the HCs perceptions regarding the oncological pediatric patients? difficulties, concerns and needs during the course of the disease. Each participant had, at least, two years of contact (as clowns) with the oncological hospital wards. Results show that regarding the children/adolescents? difficulties, clowns emphasized developmental complications (e.g., acceleration of the maturation process and loss of their own identity); behavior problems; emotional difficulties; and troubles dealing with the physical discomfort caused by the treatment?s side effects. Worries about the disease/treatment (e.g. length, efficacy, secondary effects) and the timings of the discharge (“When is it going to happen?”) were also highlighted. Regarding children/adolescents? needs, clowns perceived “normality” and “freedom of action” in the hospital (and in the all course of the disease) as the most pressing.
Acknowledgements
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Keywords
Pediatric Oncology,Clown Doctors