The stigma experiences and perceptions of families living with epilepsy: Implications for epilepsy-related communication within and external to the family unit

Benson, Ailbhe; O'Toole, Stephanie; Lambert, Veronica; Shahwan, Amre; Austin, Joan K.

doi:10.1016/j.pec.2016.06.009

Cited by 50 publications

(84 citation statements)

References 30 publications

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“…Consequently, they engaged in actions that aimed to preserve their pre‐illness identity. Previous research has similarly highlighted how young people with chronic illness feel different to their peers and strive to present themselves as “normal” to maintain and reinforce a nondifferent identity (Benson et al, ; Benson et al, ; Curtis‐Tyler, ; Jessup & Parkinson, ; Williams et al, ). However, how young people feel personally changed by a chronic illness diagnosis has previously been underexplored.…”

Section: Discussionmentioning

confidence: 99%

“…Participants used information control as a strategy for identity management. Concealment of illness has been previously identified (Barned et al, ; Benson et al, ; Benson et al, ; Kaushansky et al, ; Venning et al, ); however, research has highlighted how non‐disclosure may exclude young people from peer support and be associated with poor adjustment, distress, social isolation, and poor self‐image (Gerson et al, ; Instone, ; Tong et al, ). Participants' transition to openness was prompted not only in part from choice but also by the need to justify and explain school absences and visible symptoms.…”

Section: Discussionmentioning

confidence: 99%

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“I'm not what I used to be”: A qualitative study exploring how young people experience being diagnosed with a chronic illness

Kirk

Hinton

2019

Child

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Background: Childhood long-term conditions are usually diagnosed in infancy or early childhood. Little is known about the particular experiences and needs of young people who receive a chronic illness diagnosis during adolescence or late childhood. This paper will examine this experience in relation to multiple sclerosis (MS), which is increasingly being diagnosed before adulthood.Aims: To explore how young people experience an MS diagnosis.Methods: Qualitative study using a grounded theory approach. In-depth interviews were conducted with 21 young people diagnosed with MS. Participants were recruited through health service and voluntary sector organizations in the United Kingdom.Results: Young people's pre-illness normality was disrupted by the diagnosis of a chronic illness (MS). Participants experienced their body as changed physically, cognitively, and emotionally and as changeable due to symptom unpredictability. This influenced how participants perceived and presented their identity, disrupted their relationships, and altered their future biography. Young people developed strategies to manage their condition and identities in order to incorporate MS into their current and future lives, which required continual illness and identity work in response to changing symptoms, social contexts, and relationships.Conclusions: Although young peoples' experience of living with chronic illness has been widely explored, the aftermath of diagnosis has been underresearched from their perspective. This study contributes to this knowledge gap by illuminating how young people experience a chronic illness diagnosis and negotiate the resulting changes to their identity, relationships, and future. The findings suggest that young people need preparation and support in disclosing their diagnosis to others. Professionals supporting young people with long-term conditions need to work closely with specialist mental health services to ensure that they receive appropriate emotional support. Schools have an important role in ensuring young people with long-term conditions achieve their academic potential and receive appropriate careers advice.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

“I'm not what I used to be”: A qualitative study exploring how young people experience being diagnosed with a chronic illness

Kirk

Hinton

2019

Child

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“…In fact, psychosocial factors related to the stigma of epilepsy have a greater impact on the quality of life of PWE than clinical variables, such as side effects of medications [ 54 , 55 ]. The elements contributing to felt stigma vary by region and culture, but those commonly cited include seizure worry, lack of social support, and seizure severity [ 56 , 57 , 58 , 59 ]. Family members and close supporters of PWE also report high levels of stigma [ 57 , 60 ].…”

Section: Literature Reviewmentioning

confidence: 99%

Quality of Life and Stigma in Epilepsy, Perspectives from Selected Regions of Asia and Sub-Saharan Africa

2018

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Epilepsy is an important and common worldwide public health problem that affects people of all ages. A significant number of individuals with epilepsy will be intractable to medication. These individuals experience an elevated mortality rate and negative psychosocial consequences of recurrent seizures. Surgery of epilepsy is highly effective to stop seizures in well-selected individuals, and seizure freedom is the most desirable result of epilepsy treatment due to the positive improvements in psychosocial function and the elimination of excess mortality associated with intractable epilepsy. Globally, there is inadequate data to fully assess epilepsy-related quality of life and stigma, although the preponderance of information we have points to a significant negative impact on people with epilepsy (PWE) and families of PWE. This review of the psychosocial impact of epilepsy focuses on regions of Asia and Sub-Saharan Africa that have been analyzed with population study approaches to determine the prevalence of epilepsy, treatment gaps, as well as factors impacting psychosocial function of PWE and their families. This review additionally identifies models of care for medically intractable epilepsy that have potential to significantly improve psychosocial function.

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“…Epilepsy, the fourth most frequent neurological disorder, affects more than sixty million people globally (Singh, 2015;Singh & Karkare, 2017;Trinka et al, 2015;Singh, He, McNamara, & Danzer, 2013;Singh, LaSarge, An, McAuliffe, & Danzer, 2015). The social stigma linked with this condition often primes depression and is frequently associated with a decline in the quality of life (Benson et al, 2016;Hester et al, 2016;Luna et al, 2017). The problem is exacerbated by the confusion of focusing research efforts on multiple anti-epileptic drugs (AEDs), some of which show mixed results in the refractory epileptic populations (Ahmad et al, 2017;de Biase, Valente, Gigli, & Merlino, 2017;Nolan, Marson, Weston, & Tudur Smith, 2015;Pellock et al, 2017;Turner & Perry, 2017).…”

Section: Introductionmentioning

confidence: 99%

The Application of Text Mining Algorithms In Summarizing Trends in Anti-Epileptic Drug Research

Singh¹,

Karkare²,

Baswan³

et al. 2018

IJSP

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Content summarization is an important area of research in traditional data mining. The volume of studies published on anti-epileptic drugs (AED) has increased exponentially over the last two decades, making it an important area for the application of text mining based summarization algorithms. In the current study, we use text analytics algorithms to mine and summarize 10,000 PubMed abstracts related to anti-epileptic drugs published within the last 10 years. A Text Frequency -Inverse Document Frequency based filtering was applied to identify drugs with highest frequency of mentions within these abstracts. The US Food and Drug database was scrapped and linked to the results to quantify the most frequently mentioned modes of action and elucidate the pharmaceutical entities marketing these drugs. A sentiment analysis model was created to score the abstracts for sentiment positivity or negativity. Finally, a modified Latent Dirichlet Allocation topic model was generated to extract key topics associated with the most frequently mentioned AEDs. We found the top five most common drugs that appeared from the analysis were Gabapentin, Levetiracetam, Topiramate, Lamotrigine and Acetazolamide. We further listed the key topics associated with these drugs and the overall positive or negative sentiment associated with them. Results of this study provide accurate and data intensive insights on the progress of anti-epileptic drug research.In this study, we analyze 10,000 PubMed abstracts related to AEDs with the end goal of content summarization and Due to the coupling between θ and φ in the integrand (above equation), the precise implication in mLDA is obstinate (Blei et al., 2003).The number of topics was selected according to the Rate of Perplexity Change (RPC) previously described by Zhao and colleagues (Zhao et al., 2015). This algorithm yielded two key topics on average which were further curated manually.

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The stigma experiences and perceptions of families living with epilepsy: Implications for epilepsy-related communication within and external to the family unit

Cited by 50 publications

References 30 publications

“I'm not what I used to be”: A qualitative study exploring how young people experience being diagnosed with a chronic illness

“I'm not what I used to be”: A qualitative study exploring how young people experience being diagnosed with a chronic illness

Quality of Life and Stigma in Epilepsy, Perspectives from Selected Regions of Asia and Sub-Saharan Africa

The Application of Text Mining Algorithms In Summarizing Trends in Anti-Epileptic Drug Research

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