Exploring the prevalence and profile of epilepsy across Europe using a standard retrospective chart review: Challenges and opportunities.

OBJECTIVE: This study aimed to determine the prevalence of epilepsy in four European countries (Austria, Denmark, Ireland, and Romania) employing a standard methodology. The study was conducted under the auspices of ESBACE (European Study on the Burden and Care of Epilepsy). METHODS: All hospitals and general practitioners serving a region of at least 50 000 persons in each country were asked to identify patients living in the region who had a diagnosis of epilepsy or experienced a single unprovoked seizure. Medical records were accessed, where available, to complete a standardized case report form. Data were sought on seizure frequency, seizure type, investigations, etiology, comorbidities, and use of antiseizure medication. Cases were validated in each country, and the degree of certainty was graded as definite, probable, or suspect cases. RESULTS: From a total population of 237 757 in the four countries, 1988 (.8%) patients were identified as potential cases of epilepsy. Due to legal and ethical issues in the individual countries, medical records were available for only 1208 patients, and among these, 113 had insufficient clinical information. The remaining 1095 cases were classified as either definite (n = 706, 64.5%), probable (n = 191, 17.4%), suspect (n = 153, 14.0%), or not epilepsy (n = 45, 4.1%). SIGNIFICANCE: Although a precise prevalence estimate could not be generated from these data, the study found a high validity of epilepsy classification among evaluated cases (95.9%). More generally, this study highlights the significant challenges facing epidemiological research methodologies that are reliant on patient consent and retrospective chart review, largely due to the introduction of data protection legislation during the study period. Documentation of the epilepsy diagnosis was, in some cases, relatively low, indicating a need for improved guidelines for assessment, follow-up, and documentation. This study highlights the need to address the concerns and requirements of recruitment sites to engage in epidemiological research.

Development and psychometric evaluation of the youth and parent versions of the Epilepsy Disclosure Scale (EDS).

OBJECTIVES: The aim of this paper was to describe the development and psychometric evaluation of new Epilepsy Disclosure Scales (EDSs) for youths with epilepsy (YWE) and their parents. METHODS: Developing the EDSs for youths and parents comprised a number of stages, including questionnaire construction and item development for the new EDSs (consisting of a pilot and review of the newly developed EDSs) and psychometric evaluation of the measures to assess their appropriateness, factor structure, reliability, and validity. Psychometric properties were determined using a cross-sectional survey of 47 YWE and 72 parents. RESULTS: Two scales were developed to assess the epilepsy disclosure behaviors of YWE and their parents; that is, the extent to which they tell and talk to others about the child's epilepsy. The youth version of the EDS comprised six items and had a unidimensional factor structure that explained 55% of the variance. The parent version of the EDS also consisted of six items, with a single factor explaining 47% of the variance. The suitability, validity, and reliability of the youth and parent versions of EDSs were supported by positive indicators, such as a high Cronbach's alpha (representative of good internal consistency) and the confirmation of a number of hypothesized relationships between epilepsy disclosure and psychosocial and illness attitude variables (demonstrative of their convergent validity). CONCLUSION: Prior to the development of these instruments, no valid and reliable measures existed that could suitably capture disclosure amongst populations living with epilepsy. The youth and parent versions of the EDS are valid, reliable, brief, and easily administered and thus could prove useful in research as well as in the clinical setting. These scales will enable researchers and clinicians to profile the epilepsy disclosure behaviors of YWE and their parents, which play an important role and have implications both for the psychosocial wellbeing of families living with epilepsy and for epilepsy-related stigma.

"I don't want them to look at me and think of my illness, I just want them to look at me and see me": Child perspectives on the challenges associated with disclosing an epilepsy diagnosis to others.

OBJECTIVES: Disclosure of a concealable stigmatized identity, such as epilepsy, to those external to the nuclear family can be complex. Among children living with epilepsy (CWE), diagnosis disclosure has been identified as a quality-of-life issue and a source of psychosocial distress. Despite this, limited empirical evidence exists regarding the disclosure experiences of CWE. This study aimed to identify the contextual factors that act as challenges for CWE when disclosing their epilepsy diagnosis to others external to the nuclear family. METHOD: This qualitative exploratory study consisted of individual interviews with 29 CWE (aged 6-16 years; mean age=11.17 years; S.D.=2.85). Participants were recruited from a tertiary referral unit in the neurology department of a pediatric hospital and through a national epilepsy association. Interviews were audiotaped and transcribed verbatim. Data were thematically analyzed. FINDINGS: The five main challenges to epilepsy diagnosis disclosure for children were: 1) CWE's desire for normalcy, 2) out of sight but in the mind, 3) contending with negative responses to disclosure, 4) the complexity of epilepsy, and 5) self and others' perceptions of epilepsy. DISCUSSION: These findings provide valuable insight into the factors that present difficulties and impede epilepsy diagnosis disclosure among CWE. Such knowledge is important in informing engagements between health-care professionals (HCPs) and CWE. In particular, HCPs should remain cognisant of the challenges CWE face as they: (i) strive for normalcy and (ii) grapple with comprehending their complex neurological condition. Tackling such disclosure challenges could serve to enhance life quality, improve CWE's openness with others about epilepsy, and consequently work toward reducing epilepsy-related misconceptions and stigma.

Relationship between parent-adolescent communication and parent involvement in adolescent Type 1 diabetes management, parent/family wellbeing and glycaemic control.

OBJECTIVES: This study investigated the relationship between parent-reported degree of openness and extent of problems in parent-adolescent communication and parent involvement in adolescent Type 1 diabetes management, parent and family wellbeing and adolescent glycaemic control. METHODS: A cross-sectional quantitative survey was conducted. Parents completed measures of parent-adolescent communication, parent monitoring of diabetes care, diabetes family responsibility, parent knowledge of diabetes care, parent activation, parent diabetes distress, and diabetes family conflict. RESULTS: In total, 146 parents/guardians (121 mothers, mean age 46.56 years, SD 5.18) of adolescents aged 11-17 years (mean age 13.9 years, SD 1.81) with Type 1 diabetes completed the survey. Open parent-adolescent communication was significantly correlated to adolescents' voluntarily disclosing diabetes-specific information to their parents more frequently, increased parental knowledge of their adolescent's diabetes care completion, parents feeling more capable and willing to take action in relation to their adolescent's diabetes health, lower levels of diabetes-related parental distress, less diabetes-specific family conflict, and optimal glycaemic control. DISCUSSION: Parent-adolescent communication has an important role to play in Type 1 diabetes healthcare management and psychosocial wellbeing during adolescence. Optimising open parent-adolescent communication represents a potentially useful target for interventional research and should be considered by healthcare professionals during healthcare encounters.

Monitoring the frequency and duration of epileptic seizures: "A journey through time".

Seizure monitoring plays an undeniably important role in diagnosing and managing epileptic seizures. Establishing the frequency and duration of seizures is crucial for assessing the burden of this chronic neurological disease, selecting treatment methods, determining how frequently these methods are applied, and informing short and long-term therapeutic decisions. Over the years, seizure monitoring tools and methods have evolved and become increasingly sophisticated; from home seizure diaries to EEG monitoring to cutting-edge responsive neurostimulation systems. In this article, the various methods of seizure monitoring are reviewed.

Exploring the relationship between parent-child communication about epilepsy and psychosocial well-being.

This study examined the relationship between parent-child communication and psychosocial well-being of 47 children living with epilepsy and 72 parents of children living with epilepsy. Open communication was associated with positive illness attitude, positive self-perception and greater health-related quality of life for children living with epilepsy; positive response to illness for parents; and more perceived social support and less need for epilepsy-related support for children living with epilepsy and parents. By contrast, closed communication was associated with poorer psychosocial well-being in children living with epilepsy and parents. Healthcare professionals should provide guidance for families living with childhood epilepsy on the importance of open communication in promoting greater psychosocial well-being.

Parent perspectives of the challenging aspects of disclosing a child's epilepsy diagnosis to others: Why don't they tell?

Objectives This study aimed to explore the challenges parents of children with epilepsy (CWE) experienced when deciding to disclose their child's epilepsy diagnosis to others. Methods Using a qualitative exploratory design, interviews were conducted with 34 parents (27 mothers and 7 fathers) of 29 CWE (aged 6-16 years). Parents were recruited from a neurology clinic of a specialist children's hospital and from a national epilepsy association. Interviews were directed by a semi-structured guide informed by a review of the literature. Data were transcribed verbatim, imported into NVivo, coded and thematically analysed. Results Findings revealed five themes representative of the core disclosure challenges parents encountered, many of which promoted concealment and/or selective disclosure, namely: seeking normalcy for the child, the invisibility of epilepsy, negative reactions to disclosure, contending with poor public perceptions of epilepsy and coming to terms with the diagnosis. Discussion This study presents crucial information for healthcare professionals (HCPs) who help families to navigate the disclosure decision-making process. Providing HCPs working with families living with epilepsy with insight into diagnosis disclosure challenges will enable them to recognise the support needs of parents and work collaboratively with families to tackle such difficulties, ultimately improving their psychosocial wellbeing.

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

OBJECTIVE: This paper presents the stigma experiences of children with epilepsy (CWE) and their parents and outlines the relationship between CWE's and parents' stigma perceptions, demographic and seizure variables, and epilepsy-related communication within and external to the family. METHODS: A mixed-method design was employed. In phase one, 33 CWE and 40 parents participated in qualitative interviews. In phase two, 47 CWE and 72 parents completed a cross-sectional survey. RESULTS: CWE and their parents experience felt and enacted stigma via social exclusion, activity restriction, teasing/bullying, internalised negative feelings to epilepsy, concealment of epilepsy and parental stigma-coaching. Higher CWE and parent stigma perceptions were significantly correlated with greater epilepsy concealment from others outside the family and greater negative affect around epilepsy-related communication within the home. CONCLUSION: As CWE and their parents grapple with epilepsy-related stigma they may inadvertently contribute to the silence encircling epilepsy through diagnosis concealment, stigma-coaching and/or by engaging in limited family dialogue about epilepsy. PRACTICE IMPLICATIONS: Healthcare professionals need to be cognisant of broaching the sensitive topic of epilepsy-related stigma during their engagements with families living with epilepsy. Assisting families to appropriately engage in dialogue surrounding epilepsy is likely to improve the psychosocial wellbeing of CWE and their parents.

Stigmatising feelings and disclosure apprehension among children with epilepsy.

Despite worldwide campaigns to enhance public awareness, understanding and acceptability of epilepsy, stigmatising feelings remain among children with epilepsy and their families. Stigma can be internally felt by the child (shame and embarrassment) or enacted by others (discrimination). Many children with epilepsy and their parents fear disclosure of the condition and exercise a variety of disclosure or concealment strategies. Maintaining these strategies can have a negative, stressful impact on the child's social and psychosocial development and quality of life. Continuing dialogue among families, friends, teachers and health professionals should be initiated and supported.