Publication:

Assessment of the quality of life in parents of children suffering from epilepsy

Background In case of paediatric epilepsy, parents are responsible for providing medicines, round the clock care to the child, while also sustaining their own needs and expectations from life. Socioeconomic status, interaction with healthcare workers, and the level of monetary and emotional support from external agencies play an important role in modelling the quality of life of these parents. The authors’ objective was to assess the quality of life of parents of children suffering from epilepsy and evaluate the influence of demographic and clinical variables.

Methods We conducted a cross-sectional analytical study at the out-patient department of our hospital. We recruited parents of epileptic children and those of children not suffering from any chronic illness and elicited demographic data, clinical history of illness, and QOL using the Quality of Life in the Child’s Chronic Disease Questionnaire of parents in both groups followed by analysis of the data by applying appropriate statistical tests. We used Student t- test to find the significance of data on continuous scale and Chi-square test for discrete variables. One-way ANOVA test was performed to find the influence of various variables on QOL of parents.

Results Male child, female caregiver, Hindu religion, illiterate parent, low monthly family income, residence in rural areas, GTCS type of seizure, frequent seizures during the day, and multiple medications negatively affected the QOL of parents.

Conclusions To provide holistic care to epileptic children, we need to integrate and provide social, occupational, emotional, and financial help to their parents in an acceptable, affordable, and sustainable way.