A longitudinal study over 9 years of the role of social support for people with epilepsy

Abstract

Aim: In people with epilepsy (PWE), relationships and support are critical. From receiving affection to getting help with household and medical activities, support can increase Quality of Life (QoL) and resilience. This article aims to identify how key sources of support are affected by epilepsy over a 9-year period. Methods: This longitudinal study is based on a panel of 51 of the same people measured at three points spread over 9 years—Waves 2, 4, and 5 (2010, 2016/7, and 2019/20). The article reports on supportive relationships affected by epilepsy and four different types of support. It investigates the nature and extent of the effects of epilepsy on support for PWE and how these changed over 9 years. The study uses mixed methods. Results: Measured at Wave 5, affectionate support was the most common, while positive social interaction (PSI) was the least. The study showed that over time, epilepsy was having differential effects on supportive relationships (partnerships and with family and friends). Quantitative results suggest that PWE were coping better over time with the effects of epilepsy on family and friendships. The qualitative analysis showed that in Wave 2 where PWE reported on stigma experienced, it was mainly emotional/informational support, together with some PSI that was evident. In Waves 4 and 5, support including from clinicians and epilepsy associations was presented. Some PWE reported that they wanted emotional/informational support from psychologists/counsellors. Conclusions: Support from partners changed little due to epilepsy over the 9 years, while the effect of epilepsy on support from family and friends diminished over that time. In order to more fully understand the support needs of PWE, a good grasp of the sources of social support, whether from health professionals, partners, wider family, or friends is required.

Keywords

• mixed methods
• social support
• stigma