A long and lonely road: Relatives' experiences of living with a person diagnosed with low-grade glioma.

Abstract

As low-grade gliomas (LGG) are slow-growing brain tumours, the course of the disease is hard to predict. The aim of this study was to investigate the relatives' experiences of living close to a person with LGG (grade 2). It is based on semi-structured interviews with 15 family members (60% women, mean age 47 years). The interviews were conducted by telephone three and seven years after diagnosis.The thematic analysis resulted in one overarching and recurring theme, namely the difficulties of communicating openly about what the disease entails, as well as four related themes. LGG is perceived as a scary and mysterious disease requiring new priorities to be set up in families to fulfil the needs of the person with LGG. A tangible impact is an altered relationship due to a stealthy change in the person with LGG. Living with a person with LGG for many years can be likened to travelling a long and lonely road.The relatives expressed the concern that they receive insufficient support from the healthcare system. The key clinical implication is to meet the relatives' own right to support, as well as providing information about the changeability of the disease and possible personality changes.