Being epileptic: coming to terms with stigma

Scambler, Graham; Hopkins, Anthony

doi:10.1111/1467-9566.ep11346455

Cited by 609 publications

(451 citation statements)

References 12 publications

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“…Individuals with cystic fibrosis (CF) reported hiding their condition during childhood in order to fit in socially (Christian and D'Auria 1997), while adults with severe signs and symptoms of CF were more likely to share their diagnosis than mildly affected adults who appeared Bhealthy^ (Lowton 2004;Modi et al 2010). The influence of physical appearance associated with illness has also been observed with conditions such as epilepsy and AIDS (Scambler and Hopkins 1986;Mansergh et al 1995).…”

Section: Introductionmentioning

confidence: 99%

Life experiences of individuals with hereditary hemorrhagic telangiectasia and disclosing outside the family: a qualitative analysis

et al. 2015

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Hereditary hemorrhagic telangiectasia (HHT; OMIM 187300) is a disorder that affects 1:5000-1:10,000 people worldwide, with an estimated 60,000 affected individuals in the USA. Approximately 50 % of patients with HHT experience potentially life-threatening health complications such as stroke, brain abscess, or heart failure. However, the most common symptom is spontaneous and frequent nosebleeding. HHT is a hereditary condition with significant health consequences, but little is known about how individuals cope with HHT on a daily basis and how individuals share information about the disorder with social groups outside of the family. The objectives of this study were to improve understanding of the daily experiences of patients with diagnosed HHT and to investigate how they disclose their diagnosis to various social groups (friends, dating partners, employers, and coworkers) outside of their biological family. Adult patients seen at a university HHT clinic and who had been diagnosed with HHT for at least 6 months were recruited by mail. Participants completed semi-structured telephone interviews (n=19). A qualitative content analysis of interview transcripts identified four major categories: (1) the emotional impact of HHT, (2) the social impact of HHT, (3) concerns for current and future health related to HHT, and (4) social context drives disclosure of HHT. Participants reported that although HHT was a manageable hereditary disorder, the symptoms negatively affected their daily life. It is important for health care providers to understand how individuals with rare genetic disorders are managing.

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Section: Introductionmentioning

confidence: 99%

Life experiences of individuals with hereditary hemorrhagic telangiectasia and disclosing outside the family: a qualitative analysis

et al. 2015

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“…It has been estimated that up to 25% of people with LD are unknown to statutory agencies until later in life when the parent becomes too frail to care for the individual. 17 Prejudice, assumptions and negative stereotyping have led to attitudinal discrimination (or 'enacted stigma' 18 ) by medical services towards individuals with disabilities. 19 'Felt stigma', the shame of being disabled or of having a child with disabilities and the fear of being discriminated against, has been shown to be even more disruptive of peoples' lives and well-being than the actual discrimination experienced.…”

Section: Introductionmentioning

confidence: 99%

“…19 'Felt stigma', the shame of being disabled or of having a child with disabilities and the fear of being discriminated against, has been shown to be even more disruptive of peoples' lives and well-being than the actual discrimination experienced. 18 Studies investigating the oral health needs of people with LD indicate that they consistently have worse oral hygiene levels and a greater incidence of gingival inflammation and periodontal disease than that of the general population; yet they experience more untreated disease and more extractions. [20][21][22][23] However, a recent study demonstrated a better clinical status for adults with LD than the general population although they had fewer teeth indicating that treatment is more likely to involve extraction of teeth.…”

Section: Introductionmentioning

confidence: 99%

Views and experiences of parents and siblings of adults with Down Syndrome regarding oral healthcare: a qualitative and quantitative study

Kaye¹,

Fiske²,

Bower³

et al. 2005

Br Dent J

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AimsTo investigate experiences and expectations of parents/siblings of adults with Down Syndrome (DS) regarding oral healthcare, and explore factors impacting on access and experience of dental care for this group. Design A two phase qualitative and quantitative study using in-depth interviews with a convenience sample of six parents/siblings, and a postal questionnaire of 200 parents/siblings of adults with DS who are members of the Down Syndrome Association. Results The main themes elicited from the qualitative interviews related to concern, experiences, parents'/siblings' attitudes, preferences and information. The response rate from the postal questionnaire was 63.5%. Adults with DS attended the dentist regularly but received little restorative treatment. Experience of oral healthcare was influenced by the attitudes and skills of dental health professionals; stigma; and relatives' expectations of dentists, their oral health beliefs, information and support received, knowledge and priorities. Parents/siblings wanted dentists to be proactive in providing more information on oral health issues in collaboration with other health and social care professionals. Conclusions Whilst most adults with DS visited the dentist regularly, relatively little treatment had been provided. Parents highlighted a need for appropriate and timely oral health information early in their child's life, and access to dentists who were sympathetic, good communicators and well-informed about DS.

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“…This contrasts with the situation in the urban settings, where the anonymous nature of the interpersonal interactions makes the possibility of selective disclosure of one's stigmatized condition more practicable [59]. Scambler & Hopkins (1989) described the selective use of avoidance, reticence, and "guarded disclosure" as coping strategies for enacted stigma [15].…”

Section: Discussionmentioning

confidence: 95%

“…The prevalence of stigmatization among persons with epilepsy is about 50% in the developed countries [1] [14]. To cope with this prejudice and social rejection, individuals with epilepsy tend to maintain secrecy about their condition, and rarely make reference to it in the course of social interactions [15].…”

Section: Introductionmentioning

confidence: 99%

The Stigma of Epilepsy among Outpatients in a Tertiary Hospital in South-East Nigeria

Achor¹,

Ezeala-Adikaibe²,

Obayi³

et al. 2017

OJPsych

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Background: The stigma of epilepsy is pervasive in developing country contexts and negatively affects the psychological and social wellbeing of its sufferers. The experience of stigma varies across settings and probably relate to disease severity and social characteristics. This study sought to describe the extent and correlates of perceived and enacted stigma among outpatients with epilepsy. Methods: The participants were consecutively presenting epilepsy outpatients in a tertiary facility that attended clinic regularly and had no overt medical or psychiatric co-morbidities. The patients were interviewed with a semi-structured questionnaire. Results: There were 93 participants with a mean age of 30.2 ± 10.3 years and 57.0% were males. The experience of stigma was reported by 46.2% and 67.7% of the participants for perceived and enacted stigma, respectively. Over one-third of the patients had suffered burns or a similar injury in the past. The correlates of perceived stigma were rural residence, lower levels of education, and longer duration of illness. Gender, age and frequency of seizures were not statistically significant determinants. The correlates of enacted stigma were being single, older age, rural residence, and longer duration of epilepsy. A past history of burns and disclosure of epilepsy to individuals outside the family added to the likelihood of experiencing stigma. Conclusion: The burden of epilepsy related social stigma is high in Nigeria. Cultural stereotypes and misconception add to this. There is need for appropriate culture-congruent educational interventions to provide the right information about epilepsy and debunk the misconceptions and myths associated with the condition. This will need to be coupled with astute clinical management of cases and active case finding. Both qualitative and longitudinal quantitative studies would be required to deepen our understanding of the How to cite this paper: Achor, J.U.,

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Being epileptic: coming to terms with stigma

Cited by 609 publications

References 12 publications

Life experiences of individuals with hereditary hemorrhagic telangiectasia and disclosing outside the family: a qualitative analysis

Life experiences of individuals with hereditary hemorrhagic telangiectasia and disclosing outside the family: a qualitative analysis

Views and experiences of parents and siblings of adults with Down Syndrome regarding oral healthcare: a qualitative and quantitative study

The Stigma of Epilepsy among Outpatients in a Tertiary Hospital in South-East Nigeria

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