Parents' Experiences of Having A Child Diagnosed with Landau Kleffner Syndrome

Background and Aims: Landau Kleffner Syndrome (LKS) is a rare childhood neurological disorder that is characterised by epileptic disturbance and acquired language regression. The current literature on LKS takes a predominantly medical stance, with little attention given to the affect this syndrome has on the family. Through the adoption of a qualitative design, the current, United Kingdom based, study aims to explore parents’ subjective experiences of having a child with LKS and how they cope.

Method and Results: Eight interviews were conducted with parents whose children had been previously diagnosed with LKS. Each interview was transcribed and thematic analysis conducted on the data. Two themes were identified, each indicating important aspects of the parents’ experience of LKS: 1) Challenges to coping 2) Evolution of the family roles and ways of coping over time.

Discussion: Findings highlighted challenges throughout the course of LKS. At the initial onset, parents particularly emphasised the significance of loss, while witnessing the deterioration of their child’s behaviour, skills and health. This was further exacerbated by the rarity of the disorder, which made accessing helpful formal and informal support challenging, because others typically held little knowledge about LKS. Parents reported a number of consequential changes to their lives including parenting style, managing finances, social interaction and a need to advocate. The range of ways parents coped included the acknowledgment of positive experiences, drawing from personal resources and taking one day at a time. Based on these findings, clinical, service and research level implications are considered.