A comparative study of perceived burden in parent caregivers of adolescents with epilepsy in a resource-restricted setting: Investigating the explanatory factors of perceived burden

OBJECTIVE: Parent caregivers often play vital roles in the care of adolescents with epilepsy (AWE) in resource-restricted settings; however, little is known about the burden borne by these parents. This study investigated the burden perceived by parents of AWE and described the explanatory factors. METHODS: An equal number (n = 121) of age- and gender-matched parent caregivers of AWE (cases) and parents of adolescents with sickle cell disease (comparison group) were interviewed with the Parent Illness Intrusiveness Rating Scale to assess disruptions in their relationships and lifestyle. Parents of AWE were assessed for psychological distress with the 12-item General Health Questionnaire, and AWE were interviewed with the Hospital Depression-Anxiety Scale. RESULTS: The majority of the cases and the comparison group were mothers (76%), with mean (SD) ages of 44.11 (SD = 6.92) versus 43.59 (SD = 6.39) years, respectively. The prevalence rate of psychological distress in cases was 38%, and depressive-anxiety symptom was prevalent in 39.7% of AWE. The level of perceived burden was significant in all parent caregivers, albeit higher in cases relative to the comparison group across multiple domains, including relationship/personal development, intimacy, instrumental and global. A high level of burden in parents of AWE was predicted by a poor family financial and material support to the adolescents, increased contact hours with adolescents, psychological distress in the parent caregivers, and anxiety-depressive symptoms in AWE after controlling for cofounders. CONCLUSION: The study findings underscore the need for psychosocial support to bolster resilience and adaptive coping styles in parents of AWE, particularly in resource-restricted settings. A culturally sensitive interdisciplinary blueprint of locally viable actions model for psychosocial support for parent caregivers of AWE is strongly suggested. Future studies are indicated to shed more light on the modifiable risks of perceived burden, and the effectiveness of psychosocial interventions in parents of AWE.