Caregiver Burden and Quality of Life in Epilepsy

Epilepsy exerts profound effects not only on those who experience recurrent seizures but also on the individuals who provide their primary care. Caregiver burden encompasses the multifaceted strain placed on family members or informal carers, spanning psychological distress, social isolation, economic hardship and physical fatigue. These pressures can in turn diminish carers’ own quality of life, defined by their sense of well-being across physical health, emotional stability and social engagement. The unpredictable nature of seizures amplifies vigilance demands and heightens anxiety, while stigma and inadequate access to supportive services further compound social disadvantage. At a global level, variations in healthcare infrastructure, cultural perceptions of epilepsy and socioeconomic status shape the caregiver experience. Recognition of these interdependent factors has led to the development of targeted interventions—ranging from psychoeducational programmes and peer support networks to digital self-management tools—aimed at alleviating burden and enhancing familial resilience. Integrative models that address both clinical management and caregiver well-being are increasingly advocated to sustain long-term outcomes for people with epilepsy and those who care for them.

Research from Nature Portfolio

No recent Nature Portfolio content available.

Caregiver Burden and Quality of Life in Epilepsy publication trend

The graph below shows the total number of articles in caregiver burden and quality of life in epilepsy across all publications each year (not limited to Nature Index journals).

Technical terms

Caregiver burden: The physical, emotional, social and financial impact experienced by individuals providing care to someone with a chronic condition.

Quality of life: A multidimensional measure encompassing physical health, psychological state and social relationships.

Phenomenological approach: A qualitative research method focusing on the lived experiences of participants.

Depressive symptoms: Clinical features such as persistent low mood and loss of interest assessed by standard scales.

Anxiety symptoms: Manifestations of excessive worry or fear measured using validated instruments.

References

1. Lived experiences of caregivers of persons with epilepsy attending an epilepsy clinic at a tertiary hospital, eastern Uganda: A phenomenological approach. PLOS ONE (2023).
2. The Relationship Between Depression and Anxiety Symptoms of Adult PWE and Caregivers in a Tertiary Center. Frontiers in Neurology (2022).
3. Caregivers’ Knowledge on Epilepsy and Its Relationship with Quality of Life. European Journal of Medical and Health Sciences (2023).