title: Needs for everyday life support for brain tumour patients' relatives: systematic literature review.
abstract: The purpose of this paper is to undertake a review of the everyday lives and the need for support felt by relatives of adults with malignant cerebral glioma. Through electronic literature searches we identified studies with qualitative, quantitative or mixed method designs. Fourteen studies were identified. They indicated that a relative often assumes the caregiver's role, taking over responsibility for the patient's illness and survival, and that the relative is often overwhelmingly exhausted by this task. The ever-changing circumstances left the relatives fearful, anxious and apprehensive. The relatives lacked information about how to provide day-to-day care and how to manage psychoses and neuropsychiatric problems at home. Likewise, they needed help from the professionals to talk with each other about potentially reduced life expectancy. Most relatives appeared to value specialist nurse support highly, and they found support groups helpful. Relatively few studies were identified, and extant research was found to be diverse in purpose, study design and study population. The majority of the studies focused only on the parts of the relatives' everyday lives in which they were taking care of and supporting the patient. Further research focusing on the impact of the illness on different part of relative's everyday life is needed.
authors.affiliation: Institute of Psychology, The University of Copenhagen, Copenhagen, Denmark. karina.madsen@psy.ku.dk
authors.forename: K
authors.initials: K
authors.lastname: Madsen
authors.forename: H S
authors.initials: HS
authors.lastname: Poulsen
mesh_terms: D000203:Activities of Daily Living; D000328:Adult; D000368:Aged; D001932:Brain Neoplasms / Q000451:nursing*; D017028:Caregivers / Q000523:psychology*; D005190:Family / Q000523:psychology*; D006301:Health Services Needs and Demand; D006801:Humans; D008875:Middle Aged; D012944:Social Support; D013315:Stress, Psychological / Q000523:psychology*