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.
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.
Authors: Deborah S Main; Carolyn T Nowels; Tia A Cavender; Martine Etschmaier; John F Steiner Journal: Psychooncology Date: 2005-11 Impact factor: 3.894
Authors: Paula Sherwood; Barbara Given; Charles Given; Rachel Schiffman; Daniel Murman; Mary Lovely Journal: Nurs Inq Date: 2004-03 Impact factor: 2.393
Authors: C Scaratti; M Leonardi; A Saladino; E Anghileri; M Broggi; E Lamperti; L Fariselli; R Ayadi; G Tringali; S Schiavolin Journal: Support Care Cancer Date: 2017-02-15 Impact factor: 3.603