[Life experience of adults with unilateral agenesia of the forearm: effect of prosthesis on self image and social relations]. / Parcours de vie d'adultes présentant une agénésie unilatérale d'avant-bras: enjeux et incidence du recours à la prothèse sur l'image de soi et les relations sociales.

ABSTRACT

PURPOSE OF THE STUDY This study was devoted to better understanding how adults with agenesia of the forearm live their condition. The malformation studied was identical to that of a previous study in children. The present study was designed to provide professionals and parents with a reference system for making therapeutic decisions. MATERIAL AND METHODS: An intensive survey using semi-directive interviews was conducted among adults aged 19 to 37 years, 12 women and 8 men, with unilateral agenesia of the forearm. The majority of the participants had an occupation and an active social and familial life. RESULTS: The survey revealed factors of limitation or progress, expectations and renouncements, marking the life experience of these persons. The prosthesis had a significant impact on their lives. DISCUSSION: Four types of life experience could be identified from the survey data. All four could be understood as a search for equilibrium between internal reality (desired self image) and external reality (image produced by the physical and human environment via the regards of others and obstacles encountered). Several modalities for using a prosthesis, several ways of coping with the absence of a hand, with or without a prosthesis, and several ways of constructing a self-representation were distinguished. Rather than a functional disability, agenesia was found to be perceived as a persistent problem in daily life, generating handicap- or discrimination-producing situations. CONCLUSION: Forearm agenesia creates a situation different from normal and as such makes the question of self-identity and social relations more complex than for others. The comments provided by these young adults who cope with the paradoxical condition of an amputated but functional body demonstrated the central role of the body.