A dyadic model of living with epilepsy based on the perspectives of adults with epilepsy and their support persons

Abstract

Epilepsy is a chronic condition that significantly affects the lives of individuals with epilepsy and their support persons, though few studies have examined the experiences of both individuals. To examine these experiences and explore the interpersonal relationships between dyad members, we conducted in-depth interviews with 22 people with epilepsy and 16 support persons. Data analysis was guided by a grounded theory perspective. We developed a model that shows how epilepsy impacts the lives of both people with epilepsy and support persons and how the experiences of people with epilepsy and supporters influence one another. The core model elements were seizure and treatment factors, relationship characteristics, self-management, seizure control, support provided, illness intrusiveness, and quality of life. People with epilepsy moved through the model in five trajectories depending on seizure control, relationship type, and gender. Support providers followed four trajectories based on seizure control, perception of burden, and support for themselves. People with epilepsy and their primary support providers have varied experiences in how epilepsy affects their lives. This model could serve as a basis for future research and intervention efforts focused on ways to reduce illness intrusiveness and improve quality of life for people with epilepsy and their supporters.

Reciprocal burden: Adults with drug-resistant epilepsy reflect upon informal caregiver support

“…Unpredictable episodes of altered awareness present unique challenges for daily life unmatched in other conditions. Studies in epilepsy [1][2][3]20] and other chronic illnesses [6,9] have explored the role of caregiving and quality of life of caregivers. We present a novel focus on what it was like for our participants to be the recipients of care, and how this impacted personal identity and treatment decision-making.…”

“…Due to uncontrolled seizures, poor memory and cognitive deficits, family caregivers have to be relied upon for disease management and emotional support [1]. As a consequence, epilepsy is as much a focus of the lives of caregivers, as it is for those diagnosed with the condition [2][3][4]. Caregiving is frequently subtle and varied, both with respect to how carers identify with the role and the tasks they undertake.…”

“…In addition, cultural sensitivity plays a role in how the responsibilities of caregiving are shouldered [7]. Thus, labeling these informal caregivers is not simple, and encompasses various terms such as primary support persons [3], carers [6], caregivers [8,9], or family caregivers [10].…”

“Sometimes, it just stops me from doing anything”: A qualitative exploration of epilepsy management in people with intellectual disabilities and their carers

“…Walker et al [9] outlined a dyadic model of the impact of epilepsy on people with epilepsy in the general population and their support person. Factors that contributed to negative impacts included uncontrolled seizures and requiring high levels of support in general and with self-management.…”

“…In the general population, epilepsy can have a widespread impact on people's lives, including negative effects on psychological wellbeing, adverse AED side effects, disruption to social activities, employment and education, and reduced independence [7], [8], [9]. Although there is less research on the impact of epilepsy on people with ID, poorly controlled epilepsy can severely affect social relationships, education, independence, work, daily activities, and quality of life and can increase mortality and care costs [10], [11], [12], [13], [14], [15], [16], [17], [18], [19].…”