Quality of life of epilepsy caregivers: Caregiving stress and epilepsy caregiver support services in the Hong Kong context

Abstract

Background : In Hong Kong, caregiver burden (CB) in epilepsy constitutes a huge understudied area and related researches are long overdue. This study attempts to identify the stressors, its affect and the copings of the epileptic caregivers. Methods : This research undertook a comprehensive assessment of caregiving burden and difficulties associated with informal caregiving in Epilepsy with mixed methods of data collection and analysis. Familial caregivers (FC) (N=38) completed questionnaires providing demographic, disease-related, and burden information of the care receiver with epilepsy (N=43). The researcher assessed the CB using the Chinese version of Zarit Caregiver Burden Interview (ZBI). Two caregivers and former staff of the epilepsy-related agency were prompted to identify difficult aspects of epileptic caregiving experience, reflecting on their responses to the life story interview and locating the current service gap of within the policy and formal social service in semi-structured interviews. Results : The total scores of the ZBI ranged from 41 to 77. Most family caregivers felt moderate to severer of caregiving burden (N=38; M = 58.37; SD = 11.01). Two factors, “Sacrifice and Strain” and “Inadequacy”, were seen as the significant variances that contributing caregiving burden. A high positive correlation between caregiving time spent and caregiver ZBI score was found. Conclusions : The collection and analysis of quantitative and qualitative data better explore the complexity of caregiver burden in Epilepsy. The result of both data reported caregivers experienced stigmatisation, finances and other stressors. These stressors mostly influence caregivers’ emotional well-being, family and social life etc., making them often have trouble finding the right coping strategies. The implication of caring for patient with Epilepsy (PWE) allows social care providers and policy makers for better supporting the caregiver in the community.