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Support Care Cancer. 2006 Nov;14(11):1094-103. Epub 2006 May 19.

Supportive care needs of people with brain tumours and their carers.

Author information

1
Viertel Centre for Research in Cancer Control, Queensland Cancer Fund, Spring Hill, Australia. MonikaJanda@qldcancer.com.au

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.

PMID:
16710653
DOI:
10.1007/s00520-006-0074-1
[Indexed for MEDLINE]

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