Related Experiment Video
Updated: Mar 22, 2026
Author Spotlight: Advancing Pediatric Epilepsy Surgery in Children Through Novel Biomarkers and Enhanced Localization
Published on: September 20, 2024
"I don't like talking about it because that's not who I am": Challenges children face during epilepsy-related family
S O'Toole1, V Lambert2, P Gallagher2
1School of Nursing and Human Sciences, Faculty of Science and Health, Dublin City University, Dublin, Ireland stephanie.otoole29@mail.dcu.ie.
Insights
Children with epilepsy face communication challenges with parents, impacting normalcy and activities. Understanding these barriers is key to developing supportive interventions for families managing childhood epilepsy.
Area of Science:
- Pediatric Neurology
- Child Psychology
- Communication Studies
Background:
- Childhood epilepsy significantly affects social, psychosocial, and family dynamics.
- Children with epilepsy depend on parents for condition management and guidance.
- Limited research exists on communication challenges between children with epilepsy and their parents.
Purpose of the Study:
- To explore the challenges children with epilepsy encounter when discussing their condition with parents.
- To identify barriers in parent-child communication regarding epilepsy.
Main Methods:
- Qualitative study involving semi-structured interviews with 29 children (aged 6-16) with epilepsy.
- Participants recruited from a pediatric hospital neurology department and a national epilepsy association.
- Verbatim interview transcripts were thematically analyzed.
Main Results:
- Four key themes emerged: communication hindering normalcy, parental overprotection, parental responses to epilepsy discussions, and activity restrictions due to communication.
- Children experienced difficulties in maintaining a sense of normalcy.
- Parental reactions and overprotection created communication barriers.
Conclusions:
- Greater understanding of parent-child dialogue about epilepsy is needed.
- Facilitating open communication is crucial for children's well-being.
- Findings can inform the development of communication-based interventions for families affected by childhood epilepsy.
Objectives:
Childhood epilepsy not only significantly impacts a child's social relationships and psychosocial wellbeing, but it can also cause disruptions in family relations. Children living with epilepsy often rely on parental figures for guidance in relation to their condition. A paucity of research has examined the challenges for children when communicating about epilepsy with parental figures. This qualitative study explored the challenges faced by children when talking about epilepsy with their parent(s).
Methods:
Semi-structured interviews were conducted with 29 children (aged 6-16 years) living with epilepsy. Participants were recruited from a neurology department of a major pediatric hospital and from a national epilepsy association. Interviews were transcribed verbatim and thematically analyzed.
Results:
Findings revealed four themes: communication impeding normalcy, parental overprotection, parental reactions to epilepsy-related communication, and restriction of activities as a consequence of epilepsy-related communication.
Discussion:
The study highlights the need for a greater understanding of parent-child dialogue surrounding epilepsy and where challenges lie for children in conversing about their condition. Parents and health care professionals play a pivotal role in facilitating an environment where children feel comfortable talking about epilepsy. This information will be instrumental in the development of a communication-based intervention for families living with epilepsy.
More Related Videos
08:42A Familiarization Protocol Facilitates the Participation of Children with ASD in Electrophysiological Research
Published on: July 31, 2017
10:22Interictal High Frequency Oscillations Detected with Simultaneous Magnetoencephalography and Electroencephalography as Biomarker of Pediatric Epilepsy
Published on: December 6, 2016
Related Concept Videos
01:24Epilepsy and Seizures: Overview
Various factors can trigger epilepsy, including genetic factors, brain damage, metabolic causes, and unknown etiology. Diagnosis of epilepsy involves electroencephalography (EEG), which...
01:13Seizures: Classification
Seizures are typically classified into two main categories: focal and generalized seizures.
Focal Seizures
Focal seizures originate from specific regions of the brain. These seizures are further sub-classified into two types:
01:21Barriers to Effective Communication II
Cultural barriers:
Differences in values, beliefs, religion, knowledge, and tradition can significantly impact communication. Awareness of nonverbal cues is critical, especially when conversing with a patient from a different culture. What appears appropriate in one culture may be inappropriate in another.
Semantic barriers:
As a result of their tendency to use...
01:30Family Therapy
Strategic Family Therapy
Strategic family therapy emphasizes resolving communication barriers and improving problem-solving abilities...
01:30Barriers to Effective Communication I
Communication barriers include the following:
Physiological barriers: They are limitations caused by a person's health condition or disability, such as hearing loss, poor eyesight, illness, or unconsciousness. An example to overcome this...
01:08Antiepileptic Drugs: Sodium Channel Blockers
Sodium channel blockers modulate ion channels, particularly voltage-gated sodium channels. They block only sodium ion movement.
Among the most commonly prescribed antiepileptic drugs are...