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Supportive Care in Cancer
Published in: Supportive Care in Cancer 11/2006

01-11-2006 | Original Article

Supportive care needs of people with brain tumours and their carers

Authors: Monika Janda, Elizabeth G. Eakin, Lucy Bailey, David Walker, Kate Troy

Published in: Supportive Care in Cancer | Issue 11/2006

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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.
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Metadata
Title
Supportive care needs of people with brain tumours and their carers
Authors
Monika Janda
Elizabeth G. Eakin
Lucy Bailey
David Walker
Kate Troy
Publication date
01-11-2006
Publisher
Springer-Verlag
Published in
Supportive Care in Cancer / Issue 11/2006
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI
https://doi.org/10.1007/s00520-006-0074-1

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