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

Abstract

To explore how a sample of people with uncontrolled seizures describe their experiences of receiving informal supportive care. Methods: Using constructivist grounded theory, in-person, semi-structured interviews were conducted in 35 adults with drug-resistant epilepsy. These 20 (57%) women and 15 (43%) men were aged 18-68 years (mean= 35.6 years), with a range of verbal comprehension scores. The majority, 28 (80%) lived in nuclear family settings. Results: Unpredictable seizures disrupted personal autonomy and generated unique challenges for everyday life. While supportive care was deemed necessary to survival, subjective reflections around the implications of care-receiving and caregiving, were ultimately experienced as mutually burdensome. Four dynamic and interactive dimensions revealed a mirrored, interactive perspective of what it meant to be a care-recipient: assuming responsibility; protecting and supervising; acknowledging reliance and setting boundaries. Care-recipience was not one-sided, but included actively hiding personal struggles as a way to shield the caregiver from the emotional and physical demands of caregiving. Relationship dynamics between caregivers and care-recipients played a major role in treatment decisionmaking. A clinically useful Theory of Reciprocal Burden resulted from our study. Conclusions: This study adds an explanatory dimension to the concept of illness burden from the perspective of care-recipients. Relationship dynamics play a key role in patient-centered epilepsy care, with clinical implications for guiding supportive caregiving, fostering independence and promoting self-management strategies.

Caregiver burden and COVID-19: How epilepsy caregivers experienced the pandemic

“…Our study found that perceived burden was notably high during the pandemic and was related to pandemic-related changes. Burden in the caregiving relationship also appears to be a dyadic experience, with recent findings illustrating mutually burdensome aspects for caregivers and adults with epilepsy, such as reliance on the caregiver, the assumed responsibility of the caregiver on the adult with epilepsy, setting and maintaining boundaries, and protecting one another through caregiver supervision or patient concealment of symptoms [53] . Therefore, maintaining low levels of burden not only holds health and relational implications for both caregiver and recipient, but may also help to enable people living with epilepsy to remain in the community.…”

Benzodiazepines for the Treatment of Seizure Clusters

“…The majority of patients worried about loss of seizure control in a public setting and being a burden to their caregiver [ 6 ]. Indeed, patients may under-report seizures to reduce the stress on caregivers [ 28 ].…”