Admitting that each chronic condition has a typical spectrum that may be limited, it is known that chronic illnesses and disabling conditions are common occurrences in the lives of many individuals (Livneh & Antonak, 2005). Factors related to this life experience might include the interference with the ability to perform daily activities and life roles, uncertain prognosis, the prolonged course of medical treatment and rehabilitation interventions, the emotional and social stress, as well as the degree of functional limitations. In this sense, the impact of the chronic disease condition on family and friends is real and it generates not rarely several challenges (Shapiro, 2002). The personal context adaptation to the disease added to the external resources and institutions tend to define, in each case, the quality of life of the child, adolescent and family with chronic disease (Kersten et al., 2007). In this sense, “families are often involved in struggles for the recognition of these situations as differences which entail the entitlement to be treated as citizens with all the rights granted to other citizens” (Nunes et al. 2007: 25). In fact, in spite of considering that the concept of autonomy adds just a personal perspective to assessment of participation and intervention, the main point of this discussion highlights the social domain (Barnes, 2007). As a result, public contexts such as schools, hospitals, employments,… should be regarded as active partners in the construction of an equal and fair society that promotes a better quality of life of people with chronic disease (Stainton, 2005).

This paper explores the life experiences of children and adolescents with chronic illness considering there main difficulties and strategies in terms of their quality of life, based on the administration of a questionnaire to their parents. It focuses on the parents perceptions related to the daily experiences they and their children live considering central dimensions such as autonomy, participation and well-being.

The preliminary results of the questionnaire will enable a better understanding about the daily experiences of children and adolescents with chronic illness, namely the major constraints they face to and the resources that multiple agents provide in order to promote their personal development and their adaptation to the chronic condition. The discussion will focus on empowerment theory emphasizing a rights rather than a needs perspective on experience of chronic illness.