The impact of conveying the diagnosis when using a biopsychosocial approach: A qualitative study among adolescents and young adults with NES (non-epileptic seizures)

Karterud, Hilde Nordahl; Risør, Mette Bech; Haavet, Ole Rikard

doi:10.1016/j.seizure.2014.09.006

Cited by 46 publications

(74 citation statements)

References 42 publications

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“…The participants were included consecutively on admission, as they met the inclusion and exclusion criteria [4]. Qualitative interviews were conducted towards the end of their stays using a semi-structured interview technique.…”

Section: Study Design and Interviewsmentioning

confidence: 99%

“…Young people with NES face several challenges associated with having a condition that is not considered "legitimate" [4]. Several studies have described how young people with NES and other types of MUS feel that their identity is under threat when their credibility is questioned [4,24].…”

Section: Introductionmentioning

confidence: 99%

“…Several studies have described how young people with NES and other types of MUS feel that their identity is under threat when their credibility is questioned [4,24]. They describe a lack of trust from the healthcare services, and difficult feelings due to the contentious and uncertain condition [4,[24][25][26][27].…”

Section: Introductionmentioning

confidence: 99%

“…Winger and colleagues [24] describe the young people experiencing alienation, meaninglessness, and loneliness. 4 The study described here is part of a larger project. The participants' experiences with receiving the diagnosis and their encounters with medical professionals have already been published [4].…”

Section: Introductionmentioning

confidence: 99%

“…4 The study described here is part of a larger project. The participants' experiences with receiving the diagnosis and their encounters with medical professionals have already been published [4]. In the current study our aim is to explore how young people with NES experience social participation in everyday life settings, with particular emphasis on how they manage the legitimacy of their condition.…”

Section: Introductionmentioning

confidence: 99%

See 4 more Smart Citations

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

Karterud

Haavet

Risør

2016

Epilepsy & Behavior

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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.

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Section: Study Design and Interviewsmentioning

confidence: 99%