Few studies examine in detail parental experiences of children with drug-resistant epilepsy following hemispherectomy in the US. Little is known about the impact of the hemispherectomy surgery on the patient and family journey in the long-term.

Fifty-one semi-structured interviews were conducted with parents or guardians of children with drug-resistant epilepsy who underwent anatomical or functional hemispherectomy in the US ranging from 1994-2022.  Participants were recruited within the US via a flier posted on a Pediatric Epilepsy Surgery Alliance social media group. All interviews were conducted by telephone, audio recorded, transcribed and coded using ATLAS.ti 23.2.0 using constant comparative method.

49/51 (96%) participants were female, 43/51 (84%) White , and 22/51 (43%) with graduate degrees. Reported etiologies of drug-resistant epilepsy include perinatal stroke (19/51, 37%), Rasmussen’s encephalitis (9/51,18%), cortical dysplasia (8/51, 16%) and hemimegalencephaly (8/51, 16%). The majority of caregivers (46/51, 90.2%) reported seizure-freedom after hemispherectomy at time of interview.  

Caregivers felt that the long-term lived experience of life after hemispherectomy is not well known; despite feeling that they made informed decisions for hemispherectomy surgery, they felt they encountered multifaceted sequelae that they navigated on their own, ranging from medical (orthopedic, endocrine, psychiatric sequelae) to financial and educational challenges. Social media has emerged as a vital platform for resources and information for parents after hemispherectomy.

This qualitative study suggests a large part of the lived hemispherectomy journey encompasses challenges after hemispherectomy surgery. Caregivers report navigating complex health systems with limited resources and support after hemispherectomy. Examining parental narratives of the journey beyond hemispherectomy represents an important opportunity to align resources and healthcare policy, and to define priorities for future research.