Perceived Impacts of Health Care System Navigation on Health and Well-Being Among Patients With Musculoskeletal Conditions: A Qualitative Study.

In many rural settings, the day-to-day care of persons with epilepsy (PWE) is largely carried out within households rather than formal healthcare facilities (). Family members often take primary responsibility for managing the condition, including supervising daily activities, responding to seizures, supporting treatment adherence, and assisting with healthcare visits (, ). These responsibilities extend beyond basic support and require continuous involvement in the health and well-being of the PWE. Existing studies on epilepsy caregiving have explored a range of experiences, including burden, stigma, emotional distress, supervision demands, household adjustments, and practical caregiving responsibilities (, , ). This literature has provided important insights into the everyday realities of supporting persons with epilepsy. However, caregiving is still rarely conceptualised explicitly as a form of labour embedded in everyday practices and in the functioning of the health system, particularly in rural, low-resource settings. As a result, the physical, supervisory, and organisational work undertaken by caregivers is often described but not examined as a form of hidden labour that sustains epilepsy care within households and communities. Although these perspectives highlight important challenges, they often present caregiving primarily in terms of negative experiences and may not fully capture the range of work that caregivers perform (). In particular, they pay limited attention to the everyday physical, emotional, and organisational tasks necessary to sustain care within households. The concept of hidden or invisible labour offers an alternative way to understand caregiving. Hidden labour refers to essential work that is often unpaid and not formally recognised within economic or health systems (). In the study contexts, this includes the unpaid care work provided by family members that supports treatment and recovery outside formal institutions. Caregivers may take on roles that resemble those of healthcare providers, including monitoring symptoms, managing emergencies, and coordinating care, yet these contributions are not always explicitly acknowledged within health system structures (). In the context of epilepsy, caregiving demands are intensified by the unpredictable nature of seizures and the need for constant vigilance (). Caregivers must be prepared to respond to sudden health events while also managing emotional strain and social challenges (). These responsibilities are further shaped by broader structural factors such as poverty, limited access to healthcare services, and fragmented support systems in rural areas ().