A Qualitative Study Exploring Family Life in Men Following Neurosurgery for Adult Onset Epileptic Seizures

Abstract

This study explored family relationship dynamics of men with Adult Onset Epileptic Seizures (AOES) following an elective lobectomy procedure to address their frequent seizure activity. Informants were five Australian men with history of adult-onset epilepsy for which they received neurosurgery (aged 34–59 years). Thematic analysis following semi-structured interviews yielded three themes: role marginalization, role dependency and role enmeshment. All the men reported significant role marginalization in not being consulted about everyday life activities. They also reported to experience decisional role shifting towards their spouses or partners and children post-surgery. Their family role enmeshment experiences included being perceived by spouses or partners as adult–children and by their children as a parent–child. However, some of the men were accepting of these role definitions and to add rather than take away from their health-related quality of life.

Experiences of stigma in people with epilepsy: A meta-synthesis of qualitative evidence

“…35(p.206) However, the impact of epilepsy on parenting in male participants was only clearly described in one study. 38 This study reported three types of changes in participants' perception of their role within the familyrole marginalization, role dependency and role enmeshment.…”

“…All were included, as they focused on different research questions and thus provided complementary information (n = 8). [35][36][37][38][39][40][41][42] <Insert Figure 1…”

“…59 Interestingly, participants often described conflict between appreciation of offered support and finding their dependence restrictive and infantilising, particularly in cultures in which independence was encouraged. 38…”