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.

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.

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.

Talking about epilepsy: Challenges parents face when communicating with their child about epilepsy and epilepsy-related issues.

The aim of this qualitative study was to explore the challenges that parents of children with epilepsy experienced when engaging in dialog with their child about epilepsy and epilepsy-related issues. Using a qualitative exploratory approach, interviews were conducted with 34 parents of children with epilepsy (aged 6-16 years), consisting of 27 mothers and 7 fathers. Data were transcribed verbatim and thematically analyzed. Findings revealed five main themes: normalizing epilepsy, the invisibility of epilepsy, information concealment, fear of misinforming the child, and difficulty in discussing particular epilepsy-related issues. Many of the communicative challenges experienced by parents impacted on their ability to engage openly in parent-child dialog about epilepsy in the home. Parents face specific challenges when choosing to communicate with their child about epilepsy, relating to creating a sense of normality, reducing fear of causing their child worry, and having a lack of epilepsy-related knowledge. Healthcare professionals who work closely with families living with epilepsy should remain mindful of the importance of discussing family communication surrounding epilepsy and the challenges parents of children with epilepsy face when talking about epilepsy within the home.

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.

Performance monitoring among non-patients with obsessive-compulsive symptoms: ERP evidence of aberrant feedback monitoring.

Electrophysiological studies have shown that obsessive-compulsive disorder (OCD) is associated with hyperactive performance monitoring, as indexed by the error-related negativity (ERN). The aim of the present study was to determine whether feedback monitoring is enhanced in addition to error monitoring among young adults with obsessive-compulsive symptomatology during performance of a learning task. The ERN was equivalent in amplitude for low and high OC groups. The feedback-related negativity (FRN) was more negative following presentation of incorrect feedback relative to correct feedback for the low OC group. For the high OC group, the FRN was equivalent in amplitude for correct and incorrect feedback. Young adults with high levels of obsessive-compulsive symptoms demonstrate aberrant feedback monitoring characterised by a lack of differentiation to the valence of feedback. This pattern of results may be indicative of a cognitive bias in outcome prediction associated with obsessive-compulsive symptomatology.

Unsedated percutaneous endoscopic gastrostomy insertion: a safe, effective, and well-tolerated method.

BACKGROUND: Percutaneous endoscopic gastrostomy (PEG) tube insertion is an uncomfortable procedure that has traditionally required sedation. In some patients, PEG tube insertion can be postponed or is not possible due to the risk of sedation. This article is a retrospective case series of 10 patients who have undergone unsedated peroral PEG tube insertion in the past 4 years at Stafford Hospital in the United Kingdom. METHODS: Between 2006 and 2010, 10 patients who were identified by the nutrition team as needing a PEG tube underwent unsedated peroral PEG tube insertion. Patients were given pharyngeal anesthesia (lidocaine 1%), and the PEG tubes were inserted using the push-pull technique and local anesthesia. The procedures were performed without complications. RESULTS: Those patients who were able to respond stated they would be willing to have the procedure performed again using this method. It was acceptable to them and not as unpleasant as they had expected. CONCLUSIONS: This case series demonstrates that gastroenterology units without specialized equipment are able to safely insert PEGs in patients who are at increased risk for intravenous sedation.

Prospective memory in substance abusers at treatment entry: associations with education, neuropsychological functioning, and everyday memory lapses.

Individuals with substance use disorders (SUDs) commonly report lapses in prospective memory (PM) in their daily lives; however, our understanding of the profile and predictors of laboratory-based PM deficits in SUDs and their associations with everyday PM failures is still very preliminary. The current study examined these important questions using well-validated measures of self-report and laboratory-based PM in a mixed cohort of 53 SUD individuals at treatment entry and 44 healthy adults. Consistent with prior research, the SUD group endorsed significantly more self-cued and environmentally based PM failures in their daily lives. Moreover, the SUD group demonstrated significantly lower time-based PM performance, driven largely by cue detection errors. The effect of SUDs on PM was particularly strong among participants with fewer years of education. Within the SUD cohort, time-based PM was correlated with clinical measures assessing executive functions, retrospective memory, and psychomotor speed. Importantly, time-based PM was uniquely associated with elevated PM failures in daily lives of the SUD participants, independent of current affective distress and other neurocognitive deficits. Findings suggest that individuals with SUD are vulnerable to deficits in PM, which may in turn increase their risk for poorer everyday functioning outcomes (e.g., treatment non-compliance).