Subjective well-being and severe motor impairments: the Tetrafigap survey on the long-term outcome of tetraplegic spinal cord injured persons.

The purpose of the research described in this article is to study the effects of severe motor impairments on a person's well-being, by attempting to throw light upon the inconsistencies found in the previous literature, which are due to problems of a conceptual and methodological nature. The data were gathered during the Tetrafigap survey on the long-term outcome of tetraplegic persons in France. This survey involved 1668 tetraplegic spinal cord injured people. We examine the relationships between the overall assessment of well-being as expressed by the people interviewed, and a range of clinical, social and psycho-social factors. A progressive approach, along with the use of adjustments via linear regressions, has allowed us to identify certain confounding factors, and to analyse the respective effects of the different types of variables studied. Thus current age, the age at which the impairment occurred and having or not having a professional activity do not have any direct links with the assessment of well-being, whereas the existence of pain and the subjective assessment of one's own independence and of the severity of one's disability are predictive factors. The functional independence indicators are only linked to well-being when they relate to situations in which the dependence creates embarrassment due to socio-cultural taboos. The loss of autonomy only affects well-being in as much as it imposes limits to social activity, whether they be relational or occupational. Living as a couple is a negative predictive factor if the couple were together prior to the impairment occurring. The overall results demonstrate the importance of moving beyond any conception of the impact of the impairments on well-being that is too exclusively focused on the individual, and of integrating the socio-cultural meanings of handicap situations and the dynamics of the interactions which take place therein.