The impact of developmental and epileptic encephalopathies on families: A qualitative study

Abstract

Abstract Developmental and epileptic encephalopathies (DEEs) cause disability and dependence affecting both children and the family. The questions guiding this study were: What changes do parents of children with DEEs experience in their life as a couple? What changes occur within the family and for the other family members?. We carried out a qualitative study based on the interpretivist paradigm. Twenty-one participants were selected by means of purposive sampling. Parents of children with DEEs of SCN1A, KCNQ2, CDKL5, PCDH19 and GNAO1 variants were included. In-depth interviews and researcher notes were used for data collection. A thematic analysis was performed on the data. Three themes were identified in the results: a) Assuming conflicts and changes within the couple, which caused them to distance themselves, reduced their time and intimacy and made them reconsider having more children; b) Impact of the disorder on siblings and grandparents, where it conditioned siblings who perceived DEEs as a burden in their lives, felt neglected, and needed to grow and mature alone; whereas grandparents suffered for their grandchildren and parents, in addition to perceiving that their health worsened, and c) Reconciling the care of the child with family life and work; this led the parents to share tasks, abandon or reduce working hours and ask for help Conclusions: Caring for a child with DEEs can result in neglect of social, psychological, emotional, recreational, educational, or occupational needs and obligations that ultimately impact all family members.