METHODS: Previous studies relevant to this topic were identified from 7 databases. Searches were performed in PubMed, CINAHL, Web of Science (WOS), Scopus, Psychology and Behavioral Science Collection (PBSC), Embase, PsychINFO from 1 Jan 1980 to 31 December 2023. The findings were reported according to caregiver burden, caregiver needs, and coping strategies.
RESULTS: 22 studies were included in this review, including 14 quantitative and 8 qualitative studies. Six types of burdens were identified: psychological, physical, medical, economic, social, and family. The predominantly reported burden was the psychological burden in developed and developing countries. However, caregivers in developing countries reported additional physical, social, and economic burdens due to cultural and socioeconomic factors. Furthermore, inaccessible and unaffordable health care with a lack of medical knowledge exacerbated the challenges. Stigma and misconceptions led to more psychological distress and social restriction. There is a need for psychological, social, and family support as well as medical information to promote self-efficacy among caregivers. Most caregivers develop their own coping strategies for dealing with caregiving stress.
CONCLUSION: The caregiving burden for AWE is an understudied area that needs to be addressed by healthcare professionals. The caregivers are experiencing unaddressed psychological and other types of burdens, together with a lack of appropriate interventions and healthcare information.
METHODS: The Epilepsy Self-Stigma Scale was translated into the Malay (ESSS-M) and Chinese versions (ESSS-C) according to standard principles and were tested in 100 Malay and 100 Chinese-speaking people with epilepsy (PWE) respectively. Psychometric evaluations were done based on equal item variance, convergent and discriminant validity, construct validity and reliability. Correlation analyses were carried out between the ESSS and the Neurological Disorders Depression Inventory for Epilepsy (NDDI-E) and Generalized Anxiety Disorder-7 (GAD-7).
RESULTS: For the ESSS-M, 100 Malay-speaking PWE with a mean age of 42.25 years (±15.18) were recruited. Exploratory factor analysis identified eight items loaded on three factors: "Internalization of stigma", "Societal incomprehension", and "Confidentiality". However, item 1 was loaded under a different component from the initial paper, conceptualized as confidentiality. For the ESSS-C, 100 Chinese-speaking participants with a mean age of 41.07 years (±15.57). Exploratory factor analysis identified three loading factors similar to the original scale: "Internalization of stigma", "Societal incomprehension", and "Confidentiality". Both ESSS-M and ESSS-C scales showed significant correlations with NDDI-E and GAD-7 scores, showcasing substantial construct validity. The Cronbach's alpha values were α = 0.822 for the ESSS-M and α = 0.831 for the ESSS-C.
CONCLUSION: Both the ESSS-M and ESSS-C were reliable and valid for measuring epilepsy self-stigma among the Malay- and Chinese-speaking PWE in Malaysia.