Parents Of Epileptic Children Research Articles

Stigma perception and health fatalism in parents of children with epilepsy: A cross-sectional study

AimThe aim of this study was to examine the factors that affect stigma perceptions and health fatalism of parents of children with epilepsy in eastern Turkey, the relationship between these and the impact of these on their social lives. MethodThis descriptive and cross-sectional study was conducted between August 2022 and January 2023 with the parents of children under the age of 18 who had been diagnosed with epilepsy for at least 1 year and who were followed up in the only hospital with a paediatric neurology outpatient clinic in Van province of Turkey. No sample selection was made in the study. Healthy parents (n = 123) who presented to the outpatient clinic within the specified time period and who agreed to participate in the study after being explained the purpose of the study participated in the study. ResultsIn this study, parental age was found to have a statistically weak positive correlation with Health Fatalism Scale (HFS) (r = 0.251; p = 0.005). A weak positive correlation was also found between the years patients had epilepsy and Parent Stigma Scale (PSS) (r = 0.275; p = 0.002). In addition, a statistically positive and weak relationship was found between Parent Stigma Scale scores and Health Fatalism Scale scores (r = 0.212; p = 0.018). This study found significant relationships between stigma perception and health fatalism in parents of epileptic children. Stigma perception increased with disease duration and lower parental education levels. ConclusionWhile providing an important basis for understanding the difficulties experienced by parents and developing support mechanisms, the present study can contribute to more informed support for parents of patients with epilepsy in the community. Nurses can contribute to ending stigma and discrimination by identifying patients' and parents’ perceptions of epilepsy, focusing on addressing gaps in knowledge and raising awareness in the community.

Post-traumatic stress disorder and related psychopathology in parents of children with epilepsy

Mental difficulties and psychiatric illnesses are common in families of children with epilepsy. The aim of this study is to investigate the prevalence and possible risk factors of post-traumatic stress disorder, depression, and anxiety in a sample of parents of children with epilepsy. Parents of children with epilepsy who presented to Turgut Ozal Medical Center Pediatric Neurology Outpatient Treatment Unit between January and March 2023 were invited to this cross-sectional study. Participants filled out a questionnaire examining demographic variables. Depression and anxiety levels were evaluated with the Hospital Anxiety and Depression Scale (HAD-S), and post-traumatic stress levels were evaluated with the Post-Traumatic Stress Disorder short scale (PTSD-short scale). A total of 89 parents, including 47 mothers, and 42 fathers, participated in the study. Of the study participants, 10.11% were at risk for depression and 3.4% for anxiety disorder. 6.7% had PTSD. There was a positive correlation between HAD-S subscale scores and PTSD-short scale scores. According to the linear regression model, PTSD was negatively correlated with having a job and education level, and positively correlated with anxiety and depression. Anxiety and depression were only associated with PTSD. Parents of epileptic children are at risk for PTSD, depression, and anxiety. Clinicians need to identify at-risk parents at an early stage and develop specific assist-oriented intervention programs to provide systematic support.

Assessment of quality of life in parents of epileptic children and its associated factors

Background: Aim of the study was to assess quality of life (QOL) of parents of epileptic child and its association with various factors like demographic, clinical, therapeutic and behavioral factors.Methods: Consenting parents of 160 epileptic children were enrolled after finishing child’s visit to the pediatrician. Parents were enquired on baseline demographic variables like age, gender, socio-economic status, parental education; clinical details like type of epilepsy, duration of seizure, seizure frequency and co-morbidity and therapeutic factors like treatment of epilepsy and adverse drug reactions. QOL was evaluated using QOLCE questionnaire and Childhood Illness-related Parenting Stress Inventory and analysed.Results: Out of 160 parents, 85% belong to 30-40 years of age and 62.5% were male. Deteriorated quality of life was reported by parents as mean score 63.46±7.69. QOL was significantly poor (p<0.05) in parents of younger child (<6 yrs), education status (upto primary school only), employment status of parent (unemployed) and lower socioeconomic status. Assessment of disease related parameters revealed that type of seizure, seizure frequency, duration and co-morbidity were factors significantly affecting quality of life of parents with lower QOL scores(p<0.05). QOL of parents of child with epilepsy undergoing polytherapy with multiple AEDs treatment, particle seizure control and having adverse drug reaction were associated with poor scores of health and well being (p<0.05). It was found that parents of epileptic child had deteriorated QOL score with respect to behaviour patterns irrespective to conditions of epilepsy due to constant stress and anxiety and poor state of mind.Conclusions: QOL of parents was compromised in Indian children with epilepsy. Demographic factors like age of child, parental education, socio-economic status and clinical factors like type of seizure, frequency & duration of seizure and co-morbid conditions significantly affect the QOL of parents. Significantly poor QOL scores was also due to therapeutic factors like treatment with polytherapy and adverse drug reactions with poor behavioral patterns which was observed in parents that should be taken care and should not be overlooked.

The personalised discharge letter: the experience of patients and parents from the Filadelfia Epilepsy Hospital.

To examine the experience of a discharge letter received by patients suffering from epilepsy and parents with children who suffer from epilepsy. Qualitative research inspired by a phenomenological methodology approach. Face-to-face interviews with patients and parents of epileptic children in their own homes. Participants (total n=11). In-depth interviews were recorded verbatim, transcribed and analysed. Two themes were identified: (i) it was written about me and (ii) a sense of feeling secure. By being discharged with a personalised letter, the participants felt seen and heard. The discharge letter enabled them to contact their doctor and the Filadelfia hospital more efficiently if needed. Parents indicated that the discharge letter bridged the uncertainty that they often experienced when dealing with the child's school or authorities in general. The discharge letter enables the participants to make the transition into everyday life with the best and most up-to-date information about themselves and their current condition as an epilepsy patient. The discharge letter empowers the patient or parents to face everyday life. The discharge becomes a kind of passport to the outside world when encountering the general practitioner, the school or other circumstances where the patient engages. The discharge letter becomes a patient-centred tool proving that enhanced communication and understanding between healthcare professionals, patients and parents succeeds. This example could be transferable to other hospitals to heighten the patient's self-efficacy and quality of life after being discharged from the hospital.

Valproic acid-induced thrombocytopenia

Epilepsy has a wide variety of clinical syndromes. The etiologies, presentations and prognoses are different in this disease. Accurate diagnosis is critically important for the proper care, proper treatment. Antiepileptic medications have offered patients better tolerability, but unfortunately, no significant improvements in overall seizure control have been afforded. Many epileptic conditions remain intractable to currently available medications. The goal of this book to help students, healthcare professionals and parents of epileptic children who take valproic acid to understand the main side effect of the drug which we often see in our practice –thrombocytopenia and the ways how they can prevent it. We hope that we can help to informate in this field. Research in the field of epilepsy continues at a rapid pace, with the ultimate hope of curing many intractable epilepsy patients.

Parental Beliefs and Experiences about Their Children's Epilepsy after Starting the Ketogenic Diet in Riyadh, Saudi Arabia

Objectives The aim of this qualitative study is to examine the attitude and experience of parents with epileptic children regarding the disease after ketogenic diet intervention. Methods The qualitative study used semi-structured one-to-one interviews with parents of epileptic children during their ketogenic diet intervention between June 1, 2010, and July 31, 2014. The parents of 30 children with epilepsy treated in King Fahad Medical City, Riyadh, Saudi Arabia, were included in final analysis. Results Parents reported that evil eye, spirit possession, and black magic could be the main cause of their children's epilepsy. Cultural beliefs dictate the way parents seek help. The most frequent interventions reported were going to Sheikh to read the Quran, use holy water, and black onion seeds. After starting and maintaining a ketogenic diet, there was a significant positive attitude towards the scientific ways of treating epilepsy. Parents showed a positive attitude towards the ketogenic diet intervention. Improved cognition, walking, mood, increased vocabulary, better sleep, and medication reduction were the major improvements reported in our sample set even when parents were holding cultural beliefs about epilepsy; they changed their opinion positively after the ketogenic diet. Conclusion Cultural beliefs, despite being deeply rooted in the minds of parents are still amenable to change. Professionals should carefully discuss parental beliefs and expectations in advance of ketogenic diet initiation to rectify the false ones. This study suggests that advice, support, and information, which amend culture beliefs, are recommended.

Risk Factors on Health-Related Quality of Life in Children With Epilepsy.

The goal of this study was to evaluate how epilepsy affected the health-related quality of life (HRQOL) in children with epilepsy, as well as the risk factors for poor HRQOL. Parents of epileptic children (n = 223) and parents of healthy children (n = 216) were enrolled. The Child Epilepsy Questionnaire-Parental form was given to all parents. Children with epilepsy had significantly lower HRQOL scores for overall QOL and all subscales. Seizure types were not associated with HRQOL, but the age of the child with epilepsy, disease courses and seizure frequency did influence the quality of life. Epilepsy has a severe impact on children's HRQOL, and age, increased seizure frequency and longer duration of epilepsy are associated with poor HRQOL.

Parent ’ s Knowledge and Attitudes towards Children with Epilepsy

Background: Parent’s attitudes toward children with epilepsy are influenced by the degree of their knowledge. Misinformation and misconceptions should be identified and corrected for optimal care and management. Our objectives were to study the parent’s knowledge and attitudes and identify contributing factors to negative attitudes. Methods: Consecutive parents were included prospectively through the pediatric neurology out-patient clinic of King Abdulaziz University hospital, Jeddah, Kingdom of Saudi Arabia. A structured 40-item questionnaire was designed to examine their demographics, knowledge and attitudes toward children with epilepsy. Results: A total of 117 parents were interviewed, 57% were mothers. The ages of their epileptic child ranged from 1-16 years (median 6.6), mostly (65%) boys. Although most parents (70%) felt informed about epilepsy and recognized various treatment modalities, many believed that epilepsy is a mental disorder (48%), correlates with evil (44%), and affects the child’s intelligence (38%). Up to 53% admitted that they treat their epileptic child differently and avoid upsetting or punishing him/her. This behavior was less likely if they achieved college or university education (p=0.01). Some parents (29%) admitted to using non-medical treatments, usually traditional herbs and religious practices. Those parents were more likely to believe that epilepsy is a mental disease (p=0.002) or correlates with evil (p=0.015). Conclusions: The level of knowledge and understanding about epilepsy among parents of epileptic children needs improvement. Many parents have significant misconceptions, negative attitudes, and poor parenting practices. Increased awareness and educational programs are needed to help improve the quality of life of these patients and their families.

Pediatric Epilepsy and Parental Sleep Quality

To evaluate the effects of pediatric epilepsy on sleep in parents of epileptic children. Cohort design in which the sleep quality of parents of epileptic children (POEC) and parents of nonepileptic children (PONEC) in the month preceding recruitment were compared using the self-administered Pittsburgh Sleep Quality Index (PSQI). Mothers of epileptic children had a 7-fold occurrence of sleep disturbances when compared to mothers of non-epileptic children (OR = 6.66 CI 95% 1.10-70.08). The sleep characteristics that showed statistically significant differences were: sleep duration, sleep continuity, and self-evaluation of sleep quality (p < 0.05 for all parameters). No significant difference in sleep quality was found between fathers of epileptic children and fathers of nonepileptic children. Sleep disturbances are more common in mothers of epileptic children. The sleep quality of mothers to epileptic children should be considered in their comprehensive management, and if necessary, the sleep disturbance should be addressed.

Parental awareness on anti-epileptic treatment

Objective To assess awareness on anti-epileptic therapy among parents of epileptic children. Setting Epilepsy clinic, University Paediatric Unit, Colombo South Teaching Hospital. Study population All patients registered in clinic, followed up for at least 3 months. Method An interviewer administered questionnaire was used covering 16 aspects of anti-epileptic therapy. Responses for each aspect were graded as excellent (70% or >), good (50-69%) or poor (<50%). Results Parents of 58 children were interviewed. 100% parents had been advised on general aspects of epilepsy and 92% on principles of anti-epileptic drug (AED) therapy. In 93% this knowledge had been imparted to parents by a medical officer. In 96% this advice had been given at onset of treatment and in 64% it had been reinforced subsequently. A 'good' or 'excellent' response was obtained in 11 aspects of AED therapy whilst a 'poor' response was obtained in the remaining 5 aspects. Conclusions Parental awareness of certain aspects of AED therapy needs to be improved.

Use of herbal medicine in epileptic children

Purpose : Herbal medicine is thought to be widely used by children with epilepsy, but there have been few studies. This study aimed to investigate the perceptions and the actual conditions of usage of herbal medicine by children with epilepsy. Methods : From July to August 2007, three hundred seventy eight questionnaires were completed by parents of epileptic children who visited pediatric neurology clinic of Korea University hospital and Kwangmyung-Sungae hospital. Demographic data and patterns of usage of herbal medicine were investigated. Results : Among 378 patients, sixty five (17.2%) reported using herbal medicine. Major reasons for using herbal medicine were 'to enhance general health' and 'belief that it has fewer side effects'. Majority of respondents did not notify their physician about using herbal medicine because 'they did not need to share this with doctor' and 'they thought their doctor would disapprove'. After taking herbal medicine, 33.3% of patients reported that it did not benefit their seizure but they felt healthier. Usage of herbal medicine was significantly related to number of AEDs (antiepileptic drugs), duration of AED treatment, association with psychosomatic disorders and motivation by other people or by mass media. Conclusion : Considerable numbers of epileptic children were using herbal medicine during treatment with AED and did not inform their physician about usage of it. Physicians should be aware of benefits and harms of herbal medicine and actively intervene in the usage of herbal medicine by epileptic patients.