Stressors of Caregivers of School-Age Children With Epilepsy and Use of Community Resources

Abstract

Childhood epilepsy causes multiple stressors, difficulty in adjustment, and disruptions in family relations. This study sought to identify stressors of caregivers of school-age children and to assess whether use of community resources alleviates or contributes to caregiver stress. Stressors refer to concern about the child, communication with healthcare providers, changes in family relationships, interaction with school, and support within the community. A caregiver refers to the person who had looked after the child for the past 6-12 months. Support groups, religious or worship groups, counseling services, and traditional and spiritual faith healers were the community resources that were addressed. Face-to-face interviews were conducted on a convenience sample of 46 caregivers. A three-part structured interview schedule was used to describe demographic data, stressors of caregivers, and use of community resources. The top 6 stressors were the inability to get antiepileptic drugs, the deep pain or sadness caused by the child's seizures, caregiving (which was predominantly by mothers), limited help from the extended family, inadequate information on side effects of drugs, and inadequate information on seizures. The most commonly used community resource was religious or worship groups, with epilepsy support groups being least used. To alleviate caregiver stress, it is important that healthcare providers routinely assess the effect of seizures on caregivers and refer those requiring counseling, advocate for more male and extended family involvement in caregiving and provide adequate information on side effects of drugs and on seizures as standard practice. Nurses in developed countries should incorporate religious activities among complementary and alternative medicine interventions to reduce caregiver stress. Spiritual faith healers should be encouraged to refer clients with epilepsy for drug therapy and counseling.

Parental knowledge, attitudes, and behaviors towards children with epilepsy in Belgrade (Serbia)

“…It was noted in the United States that faith and sacrifice help parents cope with their child's epilepsy and that the parenting role is not the same for the affected child and other siblings [32]. Similarly, research in Zimbabwe documented that religious or worship groups were the most common mode of community support for parents, whereas epilepsy support groups were the least addressed [33].…”

Childhood epilepsy in a tropical child psychiatric unit: Challenges of providing care in a resource-constrained environment

“…[22] For example, stress has been identified as a cofounding issue among caregivers in epilepsy and other conditions with special health care needs. [20,22,23] It calls for the formal incorporation and strengthening of caregiver psychosocial management in the management plan for children with epilepsy.…”

Burden of Care of Filipino Children with Epilepsy and its Impact on Quality of Life, Anxiety and Depressive Symptoms among Caregivers

“…[3,10,19] In addition, younger caregiver age was also associated with better QoL as younger caregivers better understand the illness of their patients, have stronger social support or respond more positively to their situation. [3,11,20] The frequency and type of seizures did not show signii cant association with caregiver QoL. [3,21,22] In some studies, marital status, education level, economic status, and employment status did not seem to inl uence caregiver burden or QoL.…”