Stigma and Self-Efficacy
Research type
Research Study
Full title
The relationship between Stigma and Self-Efficacy in individuals with epilepsy or nonepileptic attack disorder
IRAS ID
237613
Contact name
Markus Reuber
Contact email
Sponsor organisation
Sheffield Teaching Hospitals NHS FT
Duration of Study in the UK
0 years, 10 months, 4 days
Research summary
Research Summary:
The aim of this study is to investigate the extent to which self-efficacy (the beliefs one holds regarding their ability to affect prospective situations and circumstances) is related to the degree individuals with epilepsy or nonepileptic attack disorder (NEAD) feel stigmatised. The study will also examine whether self-efficacy is more relevant to the degree of stigmatisation that individuals feel than anxiety, depressive symptoms and seizure severity. This study will use a cross-sectional design with a quantitative analysis. Individuals with epilepsy and NEAD will be recruited online with the support of patient organisations and be via the Royal Hallamshire Hospital Seizure Clinic.Summary of results:
This study finds that depression was the key predictor for perceived stigma scores for participants with epilepsy and participants with NEAD. This is perhaps not surprising given the available literature linking depression and perceive stigma and a similar findings have been found for participants with epilepsy by Rawlings, Brown, and Reuber (2017). Manos, Rusch, Kanter, and Clifford (2009) suggest a model that may help explain the link between depression and perceived stigma. Although their focus is on individuals whose primary diagnosis is major depressive disorder, they argue that the symptoms of depression lead an increase in the salience of stigmatising attitudes. For example, an attempt to hide seizures may lead to the avoidance of social situation, which in turn may increase the depressive situation and perceived stigma (Ottenbreit & Dobson, 2004). Research has also indicated that the feeling of stigma can be predictive of depressive symptoms (Griffiths, Christensen, & Jorm, 2008; Livingston, & Boyd, 2010)
Evidence suggests that individuals who are depressed are more likely to appraise situation and social interaction negatively and show an impaired ability to recognise happiness in others (Joormann, & Gotlib, 2006; Leppänen, 2006; Surguladze, et al., 2004). This linked to research which suggests the individuals with NEAD often report negative experiences of care from health professionals (Rawlings & Reuber, 2016; Rawlings, & Reuber, 2018) and that evidence suggests that there may be differences in interactions between individuals with NEAD and healthcare professional compared with similar interactions between those with epilepsy and healthcare professionals (Monzoni, Duncan, Grünewald, & Reuber. (2011). Therefore, individuals with NEAD may be acutely aware of perceived stigma from others and more likely to regard interactions with others in a negative light, which is compounded by individuals with NEAD experiencing enacted stigma from others.
The link between depression and perceived stigma in individuals with epilepsy is supported by existing research (Rawlings, Brown, and Reuber, 2017). It is interesting that individuals with NEAD reported higher levels of depression than individuals with epilepsy and that the NEAD populations mean scores were above the clinical cut-off whilst the epilepsy participants were not. Nevertheless, much of the proposed model by Manos, Rusch, Kanter, and Clifford (2009) may also apply to participants with epilepsy; depression increases the salience of stigmatising experiences.
It is, however, possible that that the SSCI taps into different processes for epileptic and NEAD participants. The link between diagnosis of mental illness and stigma is well established and therefore the SSCI may be measuring the stigma associated with mental illness rather than specifically stigma related to non-epidictic attacks (Rüsch, Angermeyer, & Corrigan, 2005). This may also explain why there was not a link between symptom severity and perceived stigma in the NEAD group but there was for the epilepsy group.
The SSCI focuses on the perception of the relationship with others. As highlighted by Rawlings, Brown, and Reuber (2017), it may be that when measuring perceived stigma in participants with NEAD, some of the results may also be measuring difficulties with inter-personal relationships. Green, Norman, and Reuber (2017), report high levels of attachment difficulties in individuals with NEAD, therefore the SCCI may also be reporting interpersonal difficulties for participants with NEAD, rather than just perceived stigma.
One possible explanation for the relatively high PHQ-9 scores in participants with epilepsy and the link between PHQ-9 scores and perceived stigma, is that some items of the PHQ-9 may be measures symptoms of epilepsy, rather than symptoms of depression. Although the PHQ-9 has been validated for individuals with epilepsy (Rathore, 2014; Fiest, et al. 2014) Somboon et al., (2019) highlight how common insomnia is for individuals with epilepsy. Therefore item 3 on the PHQ (see appendix B) “Trouble falling asleep, or sleeping too much”, may be measuring a symptom of epilepsy rather than depression. Indeed, item 4 (“Feeling tired or having little energy”) and item 7 (“Trouble concentrating on things, such as reading a newspaper or watching television) are similar to items on the LSSS (see appendix F; Item 4 “After my most severe seizures: I feel very confused” to “I do not feel confused at all”; Item 8, “After my most severe seizures: I always feel sleepy” to “I never feel sleepy”). If the high number of average yearly seizures (m= 120.62 per year) reported by patients with epilepsy is also taken into account, it may be that elements of the PHQ-9 are also measuring symptom severity. With would also help to explain why there was the high degree of correlation between symptom severity, PHQ-9 and perceived stigma in the epilepsy group, but not in the NEAD group. A recent systemic review of depression screening tools for individuals with epilepsy by Gill et al. (2017) suggests that the Neurological Disorders Depression Inventory for Epilepsy (NDDI‐E; Gilliam et al. 2006) may be a better tool for measuring depression in individuals with epilepsy than the PHQ-9. It should be noted, however, that the study by Rawlings, Brown, and Reuber (2017) used the NDDI-E and found a positive correlation between depression scores and perceived-stigma.
Whilst self-efficacy was negatively correlated for perceived stigma in individuals with NEAD (but not epilepsy) it is unclear why it was not an important factor in explaining variance in perceived stigma scores for either the epilepsy or NEAD group. Whilst this is in contrast to previous research not examining individuals with NEAD or epilepsy, it is a similar finding to the research by Rawlings, Brown, and Reuber (2017). They found that items related to self-efficacy (for example “Treatment Control” and “Personal Control”) where not correlated to perceived stigma.REC name
Yorkshire & The Humber - South Yorkshire Research Ethics Committee
REC reference
18/YH/0283
Date of REC Opinion
15 Oct 2018
REC opinion
Further Information Favourable Opinion