Supportive care needs of people with brain tumours and their carers

Support Care Cancer. 2006 Nov;14(11):1094-103. doi: 10.1007/s00520-006-0074-1. Epub 2006 May 19.

Abstract

Goals of work: 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.

Materials and 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.

Main 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.

Publication types

  • Multicenter Study

MeSH terms

  • Adaptation, Psychological
  • Adult
  • Aged
  • Aged, 80 and over
  • Attitude to Health
  • Brain Neoplasms / nursing*
  • Caregivers*
  • Female
  • Health Services Accessibility
  • Health Services Needs and Demand*
  • Humans
  • Interviews as Topic
  • Life Expectancy
  • Long-Term Care
  • Male
  • Middle Aged
  • Needs Assessment
  • Queensland
  • Respite Care
  • Social Isolation
  • Social Support*
  • Stereotyping
  • Uncertainty