title: Being the next of kin of a person with a low-grade glioma.
abstract: There is a paucity of knowledge for health-care professionals who come into contact with next of kin of persons diagnosed with low-grade gliomas. Therefore, the aim of this study was to explore the experience of being the next of kin of an adult person diagnosed with a low-grade glioma. Twenty-eight next of kin of persons with a low-grade glioma were interviewed. The data were subjected to qualitative content analysis. A quantitative data analysis was added to explore how the themes from the qualitative analysis occurred among different next of kin. Four main themes emerged: Extremely stressful emotions, Being invisible and neglected, Changed relations and roles, and Enabling strength in everyday life. The first of these occurred mainly in the early period of illness. This theme was especially predominant in the case of the patient's parents. The theme of Changed relations and roles occurred more often among next of kin some years after the person's diagnosis. The most statements occurred in all four themes were by female next of kin. Many next of kin requested emotional support for themselves and indicated that it is important that health-care staff should not forget them.
authors.affiliation: Centre for Rehabilitation Research, Orebro County Council, Orebro, Sweden. tanja.edvardsson@orebroll.se
authors.forename: Tanja
authors.initials: T
authors.lastname: Edvardsson
authors.forename: Gerd
authors.initials: G
authors.lastname: Ahlström
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D001932:Brain Neoplasms / Q000523:psychology* / Q000601:surgery; D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D003858:Dependency, Psychological; D005260:Female; D005910:Glioma / Q000523:psychology* / Q000601:surgery; D006801:Humans; D007406:Interview, Psychological; D008297:Male; D008875:Middle Aged; D011368:Professional-Family Relations; D012380:Role; D012803:Sick Role; D012934:Social Isolation; D012944:Social Support