[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.

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.

[Unilateral forearm agenesis and prosthesis]. / Agénésie unilatérale d'avant-bras et prothétisation.

PURPOSE OF THE STUDY: Antebrachial agenesis is a congenital deformity which is not invalidating for the children who have a level of independence comparable to that of other children of the same age. Although the appropriateness of a prosthesis is rarely questioned by healthcarers, it is clear that it is the healthcarers' own representation of this condition (their knowledge of the deformity and of the prosthesis proposed) that leads to the indication. The purpose of this study was to better understand the respective representations of unilateral antebrachial agenesis to help determine appropriate health care proposals. MATERIAL AND METHODS: An intensive survey using semi-directive interviews was conducted in 16 families. Group interviews with three healthcare teams were then conducted. RESULTS: Three leading topics appeared: worry about the social integration of the child, a paradoxical representation of the child perceived as independent but handicapped, and a largely negative image of the prosthesis. There was a rather important difference in the representations formulated by the parents and by the healthcarers. DISCUSSION: The discussion focused on awareness of the narcissistic content of the expectations and the plastic and functional implications of prosthesis fitting, perceived differently by parents and healthcarers. CONCLUSION: The nature of the expected result involves a change in the representation of the child more than a change in the child's body, a concept which in itself is not a true objective of healthcare. Taken the understandably difficult position of healthcarers, it might be useful to propose a different scheme for the first consultation.