The importance of work: A qualitative study of primary carers of severe ME patients’ experiences of balancing work with comprehensive caregiving responsibilities

This study explores how primary carers of severe ME patients experience combining work with a comprehensive caregiving responsibility. Data were collected through in-depth interviews with ten parents and/or guardians - two men and eight women - from various regions of Norway. The transcripts were analyzed using reflexive thematic analysis. Our analysis suggests a conflicted, ambiguous relationship and a fragile balance in the experience of combining work with comprehensive caregiving responsibilities – resulting in two overarching themes: vulnerability at work, and the workplace as a haven. The findings indicate how extensive caregiving responsibilities can affect different life spheres and underscore the importance of work in such situations. The study highlights a circularity of how work and care affect each other and emphasizes the ambiguous attitudes of balancing the two spheres. We argue that taking part in the working life may contribute to a sense of purpose, identity and respite – provided that necessary conditions such as flexibility and recognition are in place.