title: Supportive care needs of people with brain tumours and their carers.
abstract: OBJECTIVE
  The diagnosis and treatment of a brain tumour may result in long-term changes in a patient's functional and social abilities and/or in a greatly reduced life span. A qualitative investigation was conducted to examine the supportive care needs of patients with brain tumour and their carers.
  
  
  METHODS
  Overall, 18 patients and 18 carers participated in focus groups or telephone interviews, following a structured interview guide to elicit supportive care services of importance to these patients and carers.
  
  
  RESULTS
  Six major themes were identified using the framework analysis method, including needs for information and coping with uncertainty, practical support, support to return to pretreatment responsibilities or prepare for long-term care, support to deal with social isolation and organize respite care, support to overcome stigma/discrimination and support to discuss potentially reduced life expectancy.
  
  
  CONCLUSIONS
  Five recommendations to improve service delivery include: assignment of a dedicated member of the care team or case manager; proactive dissemination of information, education and psychosocial support; access to objective assessment of neuropsychological functioning; facilitating easier access to welfare payments; and services facilitating communication about difficult illness-related topics. Provision of services along these recommendations could improve supportive care of brain tumour patients and their carers.
authors.affiliation: Viertel Centre for Research in Cancer Control, Queensland Cancer Fund, Spring Hill, Australia. MonikaJanda@qldcancer.com.au
authors.forename: Monika
authors.initials: M
authors.lastname: Janda
authors.forename: Elizabeth G
authors.initials: EG
authors.lastname: Eakin
authors.forename: Lucy
authors.initials: L
authors.lastname: Bailey
authors.forename: David
authors.initials: D
authors.lastname: Walker
authors.forename: Kate
authors.initials: K
authors.lastname: Troy
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D001932:Brain Neoplasms / Q000451:nursing*; D017028:Caregivers; D005260:Female; D006297:Health Services Accessibility; D006301:Health Services Needs and Demand; D006801:Humans; D007407:Interviews as Topic; D008017:Life Expectancy; D008134:Long-Term Care; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D011793:Queensland; D012144:Respite Care; D012934:Social Isolation; D012944:Social Support; D013240:Stereotyping; D035501:Uncertainty