A qualitative exploration of the lived experience of mothers caring for a child with narcolepsy

Parents/carers of a child with narcolepsy are often required to become experts in narcolepsy and navigate health care, education, and welfare systems on behalf of their child. Managing pediatric narcolepsy is complex and challenges the child and the entire family, yet few studies have explored carers’ experiences.

Twenty mothers (50% had a child with narcolepsy < 18 years at the time of interview; 85% narcolepsy with cataplexy) participated in a 1:1 semistructured interview. Participation from fathers was sought; however, none were recruited. A multidisciplinary team of researchers/clinicians analyzed interview transcripts using thematic analysis.

Mothers perceived that most people misunderstood the whole-person impact of narcolepsy, including their child’s peers, teachers, and support networks. Narcolepsy had a substantial psychological impact on both the child and the whole family yet was largely unaddressed by health care professionals, leaving mothers unsure of where to turn for help. Most parents described negative experiences with their child’s specialist, often perceiving the specialists to lack knowledge specific to narcolepsy. Information about illness trajectory and support services was limited or inaccessible, fueling many mothers’ hopes and fears for their child’s future. Mothers also frequently described feelings of abandonment by the health care system.

Our results contextualize the whole-person impact of narcolepsy from the perspective of parents and carers, highlighting the need for proactive inclusion of parents/carers in developing health care policy and practice. It calls for developing tools and resources to capture “well-managed” narcolepsy from the perspective of parents/carers for use in research and clinical practice.