Examination of Care Burden and Hopelessness Levels of Parents with Children with Epilepsy

Abstract

Objective: The aim of this study was to examine the relationship between care burden and hopelessness levels of parents with children with epilepsy. Methods: The sample of this descriptive and correlational study consisted of 384 parents with children diagnosed with epilepsy between the ages of 0-18. The data of the study were collected in the Pediatric Neurology and General Pediatric Outpatient Clinics of Health Sciences University Van Training and Research Hospital between October 2017 and January 2018. Socio-demographic Data Form, Zarit Care Burden Scale and Beck Hopelessness Scale were used to collect the data. Results: In the study, it was determined that the mean care burden score of the parents was moderate (40±9.63) and the mean hopelessness score was mild (7.97±4.43). It was determined that the participants' educational status, income status and the presence of another person in need of care in the family significantly affected both care burden and hopelessness levels. A significant positive correlation was found between the duration of diagnosis, the number of hospitalisations, the duration of care and the time spent on care in a day and care burden and hopelessness. In addition, a significant positive relationship was found between caregiving burden and hopelessness. Conclusion: As the care burden of parents increases, the level of hopelessness also increases. Public health nurses working in Family Health Centres and nurses working in clinics should support families with children with epilepsy physically, socially and spiritually. Epilepsy should provide counselling services on seizures that occur due to the nature of the disease and issues that parents may be exposed to (such as guilt, family problems, hopelessness, economic difficulties, stigmatisation).