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This study aims to understand families' dynamics during the experience of pediatric liver transplantation, and to identify families' demands and resources. Symbolic interactionism was used as the theoretical framework and grounded theory as the methodological reference. Data were collected through semi-structured interviews with eight families at a public hospital in Sao Paulo, SP, Brazil. Two phenomena were identified: having life controlled by the transplantation represents the vulnerability of families experiencing uncertainty and fear during their children's disease experience; and struggling to reacquire autonomy refers to families' reaction when exposed to the first phenomenon, which consists of continuous adaptation to overcome suffering caused by the situation. The relationship of these two phenomena allowed for the identification of the central category: not being able to live like before. Based on this analysis, a theoretical model could be proposed to explain the experience.

Not being able to live like before: the family dynamics during the experience of pediatric liver transplantation