Lived experiences, perceived positive outcomes, and post-traumatic growth among parents with children with epilepsy: A qualitative study.

ABSTRACT

Childhood-onset epilepsy alters the everyday life of parents who have children or adolescents with epilepsy (CAWE). The aim of this qualitative study was to explore the experiences of Greek parents with CAWE, including perceived positive outcomes in their lives, where research in this area is limited. Fifteen parents took part in semi-structured interviews which were conducted online due to the social distancing measures imposed by the COVID-19 pandemic. Main results showed that parents with CAWE experience stress, somatic symptoms, mood swings, fear along with feelings of anger, and a sense of injustice. Positive outcomes were identified at a personal level, in parenting skills, and in achieving family cohesion. Parents reported that they had achieved increased personal strength, new perspectives, better life appreciation, and changes in their spiritual beliefs. Moreover, they mentioned the acquisition of new parenting skills which helped them become better caregivers as well as feeling more united with other family members. The changes that parents identified are discussed in relation to aspects of the Post-Traumatic Growth construct, and future recommendations and implications for practice are proposed.