Behandelkeuzes in pasgeborenen met craniofaciale syndromen: Een fenomenologische analyse.

Nowadays emphasize within the field of medicine is mainly being put on somatic/biological impairment and dysfunction. The contemporary scientific method falls short for studying an illness (experience of one’s disease/impairment) instead of a disease itself (biological dysfunction). In this thesis Havi Carel’s book: “Phenomenology of Illness” is used to gain insight in how we could phenomenologically approach these shortcomings of dealing with children with craniofacial impairments in the contemporary field of medicine. From a phenomenological standpoint the lived experience of ill persons needs to be respected. Judgements and statements from outsiders about the quality of life of craniofacially impaired people fall short per definition. Exactly this makes the matter extremely difficult and delicate to handle. Although no direct solution can be given, phenomenology could enrich the current debates in the field of medicine with more understanding and diversity in first-person perspectives of craniofacial impaired people. Keywords: Craniofaciale afwijkingen, Fenomenologie, Ethiek, Havi Carel