“I’ve never experienced this before, I don’t know what I need”– a qualitative study on social support and self-care during the first year after an aneurysmal subarachnoid hemorrhage

Abstract

Purpose: To describe perceived support, support needs and self-care among individuals during the first year after an aneurysmal subarachnoid hemorrhage (aSAH). Material and methods: The study had a qualitative descriptive design with a deductive approach using the concepts of social support and self-care. The informants (n = 16) had been treated for aSAH at a university hospital in Sweden and were interviewed one year after the event. The interviews were transcribed verbatim and a manifest directed content analysis was performed. Results: The findings revealed great variation in the narratives, both regarding the support received and the support desired, as well as the described self-care abilities. All codes were covered by the predefined categories and subcategories: social support (including esteem/emotional support, informational support, social companionship, instrumental support) and self-care (including self-management, self-monitoring, symptom management, self-efficacy). Conclusions: Not being offered the support needed aggravated the possibility to manage the new life after aSAH. The confidence in self-care abilities was influenced by symptom control and how much life had changed in comparison to before the aSAH. Educational efforts are suggested to facilitate the transition from hospital discharge and to promote specialized rehabilitation at home and self-care abilities.