Reassures Me There Are People Around Who Care about Me: Analyzing Meanings of Support for People with Epilepsy

Aims The study aimed to examine the nature and outcomes of social support for the well-being and quality of life (QoL) of adults with epilepsy. Methods The Australian Epilepsy Longitudinal Survey's 5th Wave included the Medical Outcomes Study Modified Social Support Survey on four dimensions of social support and the QOLIE-31. Both numerical data and open-ended responses were analyzed quantitatively and qualitatively. A mixed method was used where quantitative analysis used t-tests, analysis of variance and block recursive regression, and qualitative analysis identified themes. Results Three-hundred thirty-two people with epilepsy (PWE) participated. The quantitative component showed that for emotional/informational support being older and living alone were key factors. These as well as household income were important in tangible support. For affectionate support living alone and household income were factors, but only income was a factor for positive social interaction. In addition, only positive social interaction predicted increased QoL. In the qualitative component of the study both positive and negative supports were identified for the emotional/informational supports. Many reported the benefits of having information, although some reported failure to have their needs taken seriously by health professionals or epilepsy associations. Inability to drive was an important feature of negative tangible support as was finding some assistive services unaffordable. Reports of positive social interaction identified being accepted as a person with epilepsy that is the primary concern. Peer support plays a role here. Discussion The findings of factors affecting the four dimensions of support in this study have supported a number of studies. This includes the effects of positive social interaction on QoL. The qualitative analysis supports these results, but it also contributes to deeper understanding of support in the lives of PWE. Conclusion Social support is a particularly important issue for PWE. The results of this study demonstrate the complexities and benefits of obtaining the appropriate forms of support. This survey took place before the coronavirus disease 2019 pandemic and it may well be that this phenomenon affects PWE's support needs.