Social participation in young people with nonepileptic seizures (NES): A qualitative study of managing legitimacy in everyday life

Abstract

This qualitative study explores social participation in young people with non-epileptic seizures (NES), particularly how legitimacy of illness is managed in everyday life.Young people with NES, all females and aged between 14 and 24 years (N =11), were interviewed and followed up over a 14-month period. The transcripts were analyzed using thematic analysis.Four main themes were elaborated: 1) Delegitimizing experiences from families, schoolteachers, colleagues and employers were part of everyday life. 2) Fear of being exposed to delegitimizing events resulted in the young people trying to conceal the diagnosis; for some this resulted in isolation from all social arenas, apart from with their closest relationships. 3) Support from close relationships was protective against delegitimization and contributed towards greater social participation. 4) Perceiving NES as a legitimate disorder contributed to increased social participation.We found a relationship between legitimacy of illness experienced by the participants and the extent to which they either participated or retreated socially. Those who had an illness perception that was personally meaningful experienced their condition as being more legitimate and participated more socially.

‘Not a film about my slackness’: Making sense of medically unexplained illness in youth using collaborative visual methods

“…Recurring debilitating symptoms may have a profound effect on young people's lives and the transitional and developmental tasks they are facing, leaving them unable to attend school, take part in physical activities or function socially (McWilliams et al, 2016;Moulin et al, 2015a). While most research on MUS has focused on aetiology, qualitative studies have contributed to our understanding of the consequences, experiences and efforts of meaning making from adolescents' own perspective (Karterud et al, 2016;Kornelsen et al, 2016;Moulin et al, 2015aMoulin et al, , 2015b. The challenges for young people experiencing MUS are different from those faced by adults.…”

“…More research on contested illness conditions in youth is needed, especially studies that focus on how adolescents attempt to make sense of and cope with specific developmental challenges amplified by the symptoms, and embodied and social aspects of the illness experience (cf. Karterud et al, 2016; Risør, 2010).…”

Health related quality of life of people with non-epileptic seizures: The role of socio-demographic characteristics and stigma

“…There is a dearth of research exploring the social stigma of NES, but peripheral findings from previous studies broadly corroborate our findings. Studies show that people with NES can experience feelings of shame [ 32 ], blame and stigmatisation [ [33] , [34] ]; and might conceal the condition and isolate themselves to avoid potential adverse social reactions to seizures and feelings of embarrassment [ [34] , [35] ]. On-going support from family, friends and colleagues has been described extremely important in counteracting the social isolation associated with NES [ 36 ].…”

Psykogene ikke-epileptiske anfall hos barn

“…Barn og unge med slike anfall føler seg ofte stigmatisert og mistrodd (28). Noen opplever dette så vanskelig at de trekker seg tilbake sosialt, eller de blir overbeskyttet av foreldrene.…”

“…Dette bør gjøres på en empatisk og ikke-konfronterende måte. Diskusjoner om de mulige underliggende mekanismene ved slike anfall er helt essensielt for barnas mestring (28). Vi benytter en biopsykososial forklaringsmodell som bygger på en forstå-else av at både psykososiale og biologiske forhold kan vaere predisponerende, utløsende og vedlikeholdende faktorer.…”