Experiences of onset and diagnosis of low-grade glioma from the patient's perspective.

The aim of this study was to describe adult patients' experiences of falling ill and being diagnosed with low-grade glioma. Information concerning such experiences is lacking in the literature. The study population were adults identified within a well-defined population. Interviews were conducted with 27 patients. The interview texts were analyzed using inductive content analysis. Illness onset was described as a sequence of events. Nineteen patients narrated rapid onset and 8 patients prolonged onset. The most commonly described symptoms in both types of onset were headache, epileptic seizures, vomiting, and vision changes. Racing thoughts, depression, and tinnitus were 3 of the more uncommon symptoms. The most prominent negative experiences regarding healthcare included disrespectful encounters and a lack of opportunity for participation. The salient negative life-situation consequences included a lack of social support and attitudes expressing a lack of understanding. However, to some extent, positive experiences also emerged in the interviews concerning healthcare and life situation despite the onset of the illness. In conclusion, most of the patients in the study experienced the illness onset as stressful. Healthcare staff need particular knowledge to understand the vulnerability of the patient in the onset of low-grade glioma.