Callosotomy in children - Parental experiences reported at long-term follow-up

Before surgery, parents felt that they lived in a chaotic bubble with an unbearable situation; their child had severe and frequent seizures and had to be looked after constantly. Most parents were both satisfied and dissatisfied with the given support and information. However, if the child did not improve after surgery, parents often felt that the information before surgery had not been adequate. After surgery, they found a glimpse of hope. They felt that the family got a new life; the reduced seizure severity led to a better life situation for the family. The support was described as both good and poor. The family life situation was complex, and even if they were partly satisfied with the support, it was still not enough. However, the life situation was also very stressful because of remaining seizures, behavioral problems, and sometimes, adverse effects of surgery. The families lived in disappointment and difficulty and had to fight for their rights. This indicates that these families need more information and social service coordination both before and long after surgery. They need not only tools to manage the child's disabilities but also substantial help to care for the child and to receive the social support they need.