“A journey around the world”: Parent narratives of the journey to pediatric resective epilepsy surgery and beyond

Abstract

OBJECTIVE Although shorter time to pediatric resective epilepsy surgery is strongly associated with greater disease severity, other non-clinical diagnostic and sociodemographic factors also play a role. We aimed to examine parent-reported barriers to timely receipt of pediatric epilepsy surgery. METHODS We conducted 37 interviews of parents of children who previously had resective epilepsy surgery at UCLA (2006–2011). Interviews were audio-recorded, transcribed and systematically coded using thematic analysis by two independent coders and subsequently checked for agreement. Clinical data, including `time to surgery' (age of epilepsy onset to surgery) were abstracted from medical records. RESULTS The mean time to surgery was 5.3 years (SD=3.8); surgery types included 32% hemispherectomy, 43% lobar/focal, 24% multilobar. At surgery, parents were on average 38.4 years (SD=6.6) and children were 8.2 years (SD=4.7). The more arduous and longer aspect of the journey to surgery was perceived by parents to be experienced prior to presurgical referral. The time from second anti-epileptic drug failure to presurgical referral was ≥1 year in 64% of children. Thematic analysis revealed four themes (with subthemes) along the journey to surgery and beyond: (1) recognition: “something is wrong” (unfamiliarity with epilepsy, identification of medical emergency), (2) searching and finding: “a circuitous journey” (information seeking, finding the right doctors, multiple medications, insurance obstacles, parental stress), (3) surgery is a viable option: “the right spot” (surgery as last resort, surgery as best option, hoping for candidacy), and (4) life now: “we took the steps we needed to” (a new life, giving back). SIGNIFICANCE Multi-pronged interventions targeting parent-, provider- and system-based barriers should focus on the critical presurgical referral period; such interventions are needed to remediate delays and improve access to subspecialty care for children with medically refractory epilepsy and potentially eligible for surgery.

Putting children forward for epilepsy surgery: A qualitative study of UK parents' and health professionals' decision-making experiences

“…Throughout their decision-making, parents identified additional information and emotional support needs. This finding confirms those of other studies [2,9] in which patients and parents of children with intractable epilepsy describe receiving inadequate information regarding surgical treatment. It is already known that information helps to alleviate anxiety, and positively influences acceptance of treatment options including surgery [1,7] and that physicians play a key role in influencing parents to accept surgery for their child with epilepsy through the provision of information [1,2].…”

“…Finally, studies show that parents who have been through the process of considering and accepting surgical intervention for their epileptic child would be willing to provide decisional support to other parents, as a way of 'giving back' to the service [9]. Parents in this study also suggested that they would be happy to share their experiences with others in similar situations.…”

“…The perception of epilepsy surgery as frightening and a last resort treatment option reflects research from parental [9], patient [1,17] and professional perspectives [11]. A study by Baca and colleagues [9] found parents to perceive epilepsy surgery as "pretty horrific" and a treatment of "last resort", describing the decision-making process as "scary". Similar to our findings, parents in this study also reported that their child tried many medications which failed to reduce seizures, before surgery was raised as a potential treatment option.…”

“…A recent systematic review [8] identified nine studies examining patient perceptions of epilepsy surgery, of which, only two related to parents' views [1,2]. A further study has since reported the perspective of parents of children who have undergone epilepsy surgery [9]. These papers suggest that parental decision-making is influenced by the patient's age, parental knowledge of the condition and their treatment perceptions.…”

Identifying the trajectory of social milestones 15‐20 years after epilepsy surgery: Realistic timelines for postsurgical expectations

“…31,[40][41][42][43][44][45][46][47][48] Moreover, while the social milestones examined here, including divorce and fractured family dynamics, are common across any population, what we have described are changes in social trajectories that patients attribute to the process of undergoing surgery. In such research, a specific "control" group, healthy or medical, is typically not relevant.…”