“This takes a toll on me too”—a qualitative interview study on experiences of informal caregivers to patients who have had aneurysmal subarachnoid haemorrhage

Abstract

Purpose To describe life as an informal caregiver to someone affected by an aneurysmal subarachnoid haemorrhage (aSAH) in the first year after the event. Methods A qualitative descriptive study in which informal caregivers (n = 16) to patients treated for aSAH were interviewed one year after the event. An interview guide was used and an inductive, conventional content analysis was applied. Results Expressions of missing the previous person were evident, as she/he had changed after the aSAH. The informants described an impact on their social life, with limited time for social activities, social interactions, and hobbies. Their working lives were also affected. Findings further indicated that professional support for informal caregivers, if offered, was fragmented, person-dependent, or offered at the wrong time. Conclusion A journey with frustration and hope, impacting on relationships, social life, and working life, was evident. As few studies have focused on the perspective of informal caregivers to someone affected by aSAH, the findings are important both for research purposes and the healthcare sector. The results could form the basis for a larger exploration of support needs and how both patients and informal caregivers would like to help design and develop such support.