Written Accounts of Living With Epilepsy or Psychogenic Nonepileptic Seizures: A Thematic Comparison

Rawlings, Gregg H.; Brown, Ian; Stone, Brendan; Reuber, Markus

doi:10.1177/1049732317748897

Cited by 13 publications

(13 citation statements)

References 49 publications

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“…They also experienced prejudice and had difficulties in complying with social expectations. Unlike what was reported in other qualitative research [29,32,45], patients in Argentina did not expressly say that their illness was a stigma. Stigma theory in epilepsy is controversial, and was critizised by medical anthropologists, given the passivity it ascribes to patients [46,47].…”

Section: Discussioncontrasting

confidence: 87%

“…Adjustment to illness might be a difference between newly and drug-resistant patients with epilepsy. Although the actual number of seizures might not be a major issue for patients, learning how to live a life with seizures might be [45]. Emphasizing how to organize one's life around unpredictable seizures may prove to be useful for psychosocial interventions [48,49].…”

Section: Discussionmentioning

confidence: 99%

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A life with seizures: Argentine patients’ perspectives about the impact of drug-resistant epilepsy on their lives

Sarudiansky

Korman

Scévola

et al. 2018

Seizure

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A B S T R A C TPurpose: To understand the experience of drug-resistant epilepsy in patients from Argentina, a developing nation. Method: A qualitative approach using semi-structured interviews was used to gain an in-depth and contextual understanding of the perspectives of 20 patients with DRE. Data collection and analysis were followed by an inductive and interpretive approach informed by the principles of thematic analysis. Results: Six main themes emerged: 1) Characteristics of the illness, including seizure features -unpredictability, presence of auras, physical and cognitive consequences-and how patients relate with the use of antiepileptic drugs; 2) interactions with health system, regarding the features of the Argentine's health system, and patient's health-seeking behaviours; 3) beliefs about the illness, including psychosocial, biological and folk explanatory models; 4) beliefs about how other people perceive them, which included prejudice, responsibility and overprotection; 5) self-perception, and 6) impact of the illness on their activities. Conclusions: This information might be useful to help in the development of a conceptual model of the impact epilepsy on patients' lives. Many of the topics mentioned as relevant in Argentina coincide with those highlighted in studies that were carried out in first-world countries. However, additional topics were also reported including the role of traditional healing in health-seeking behaviour and explanatory models of illness. It is important to understand these perspectives to develop appropriate psychosocial interventions for this specific population.

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Section: Discussioncontrasting

confidence: 87%

Section: Discussionmentioning

confidence: 99%

A life with seizures: Argentine patients’ perspectives about the impact of drug-resistant epilepsy on their lives

Sarudiansky

Korman

Scévola

et al. 2018

Seizure

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“…Although there are many examples of qualitative comparison groups that are part of a mixed methods (quantitative, RCT) study (e.g., Chambers et al, 2011; Keeley, West, Tutt, & Nutting, 2014; Patel, Lee, Wheatcroft, Barnes, & Stein, 2005; Rawlings, Brown, Stone, & Reuber, 2018; Watson, Hayes, Coons, & Radford-Paz, 2013), there are much fewer qualitatively driven comparison groups, especially those that compare a group who received an intervention and those who did not. Applying a qualitative comparison group that compares two different groups on the impact of an intervention could help to highlight the key ingredients of an intervention that are making a difference.…”

Section: Discussion and Recommendationsmentioning

confidence: 99%

“…Indeed, comparisons require care and attention to detail within the analysis process (Lindsay, 2018; Morse, 2004). Many studies within this review noted the helpfulness of an overview table or figure outlining the themes comparing by the different comparison groups (e.g., see Fields et al, 2017 [see Figure 1]; Gysels & Higginson, 2011 [see Tables 3 and 4]; Hesketh et al, 2012 [see Table 2]; Keeley et al, 2014 [see Table 2]; Kyriacou et al, 2009 [see Table 4]; Lim et al, 2013 [see Box 2]; Lindsay et al, 2015 [see Table 4]; Lindsay et al, 2016 [see Table 3]; Patel et al, 2005 [see Table 1]; Rawlings et al, 2018 [see Figure 1 and Table 3]; Townsend et al, 2008 [see Figure 1]).…”

Section: Discussion and Recommendationsmentioning

confidence: 99%

Five Approaches to Qualitative Comparison Groups in Health Research: A Scoping Review

Lindsay

2018

Qual Health Res

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Qualitative researchers have much to gain by using comparison groups. Although their use within qualitative health research is increasing, the guidelines surrounding them are lacking. The purpose of this article is to explore the extent to which qualitative comparison groups are being used within health research and to outline the lessons learned in using this type of methodology. Through conducting a scoping review, 31 articles were identified that demonstrated five different types of qualitative comparison groups. I highlight the key benefits and challenges in using this approach.

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“…In stage two, a thematic analysis based on an inductive and theoretical approach was conducted. The results of these thematic analyses have been presented elsewhere [17][18][19].…”

Section: Discussionmentioning

confidence: 99%

Narrative analysis of written accounts about living with epileptic or psychogenic nonepileptic seizures

Rawlings

Brown

Reuber

2018

Seizure

Self Cite

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This study is based on a narrative analysis of individuals' written accounts of living with epilepsy (n = 29) or psychogenic non-epileptic seizures (n = 20, PNES). Narrative analysis looks at both the content and structure of the personal account. We used a form of narrative analysis that allowed us to identify common story lines, otherwise known as narrative typologies, potentially characteristic of these patient groups. Different narrative typologies were described and compared between writers with the two conditions. Methods: As part of a therapeutic writing intervention for individuals living with a seizure disorder, participants were asked to write for at least 20 min about their very deepest thoughts and feelings about their condition. Results: Five narrative typologies emerged: 1. 'Losses from Illness'stories were dominated by events individuals could no longer do, authors appeared more disabled reporting greater frequency of seizures and lower health-related quality of life. 2.'Feeling Lost'participants appeared to be in search of something and expressed uncertainty. 3.'Tackling Adversity'individuals strove to not let their condition stop them from living their life. 4.'Overcoming Challenges'stories reflected that the condition must be battled and fought with. 5.'A Normal Life'individuals had demonstrated that they are managing to live with their condition. Conclusions: While the 'Tackling Adversity' typology was preferentially used by writers with epilepsy, the 'Feeling Lost' typology was chosen more commonly by those with PNES. People with epilepsy narrate their disorder differently from those with PNES, suggesting that they have different life and illness experiences.

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Written Accounts of Living With Epilepsy or Psychogenic Nonepileptic Seizures: A Thematic Comparison

Cited by 13 publications

References 49 publications

A life with seizures: Argentine patients’ perspectives about the impact of drug-resistant epilepsy on their lives

A life with seizures: Argentine patients’ perspectives about the impact of drug-resistant epilepsy on their lives

Five Approaches to Qualitative Comparison Groups in Health Research: A Scoping Review

Narrative analysis of written accounts about living with epileptic or psychogenic nonepileptic seizures

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