Un altre viatge a Ítaca. La gestió de la pluridiscapacitat a la família

Identificador:  TDX:1495

Handle:  https://hdl.handle.net/20.500.11797/TDX1495

Autores:  Roca Roger, Montserrat

Resumen:
The overall aim of the thesis is to identify the impact of an infant with multiple disability on the daily life of the infant's family. Method: participant observation and in-depth interviews.Field of study: families with infants up to twenty years of age, with multiple disability.Results: The moral career of the family runs from chaos to empowerment.All of the family's functions and life cycle are profoundly affected.Stigmatising behaviours are embedded in public institutions.The treatment path includes the healthcare system, the educational system and social services.Families encounter difficulty in communicating with the professionals who attend on them.Families experience a constant process of grief because they have lost the child they had hoped to have.Deficiencies exist in the law on child and dependant care. No parent has failed in their duty of care. The main concern of parents is for their child's future when they are no longer present.A number of recommendations are offered for public institutions, families and society.