The information and support needs of patients diagnosed with High Grade Glioma

Objective: To understand patients' experiences of High Grade Glioma and identify and describe information and support needs along the disease trajectory. Methods: Semi-structured interviews were conducted with 19 patients. Data was analysed using grounded theory and the constant comparative met...

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Main Authors: Halkett, Georgia, Lobb, Elizabeth, Oldham, Lynn, Nowak, A.
Format: Journal Article
Published: Elsevier 2009
Subjects:
Online Access:http://hdl.handle.net/20.500.11937/19587
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author Halkett, Georgia
Lobb, Elizabeth
Oldham, Lynn
Nowak, A.
author_facet Halkett, Georgia
Lobb, Elizabeth
Oldham, Lynn
Nowak, A.
author_sort Halkett, Georgia
building Curtin Institutional Repository
collection Online Access
description Objective: To understand patients' experiences of High Grade Glioma and identify and describe information and support needs along the disease trajectory. Methods: Semi-structured interviews were conducted with 19 patients. Data was analysed using grounded theory and the constant comparative method. Results: Four major themes were identified: (1) feelings of uncertainty around prognosis and quality of life; (2) the need for individualised information; (3) dependence on carers due to cognitive deficits, loss of balance and inability to drive; and (4) communication with health professionals around prognostic uncertainty and disease progression with communication barriers due to complex language deficits. Conclusion: Previous studies in HGG pre-date the current combined modality standard of care, or examined a mixed population. This study has found that patients with HGG have needs that differ from other patients with terminal malignancy and that these needs change over time with disease progression. Practice implications: This study has identified that patients with brain tumours may have unique needs. Health professionals need to clarify patients' information and support needs and be aware that these change over and within time.
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spelling curtin-20.500.11937-195872017-09-13T15:56:52Z The information and support needs of patients diagnosed with High Grade Glioma Halkett, Georgia Lobb, Elizabeth Oldham, Lynn Nowak, A. Patient perspective Information and support needs Oncology High Grade Glioma Objective: To understand patients' experiences of High Grade Glioma and identify and describe information and support needs along the disease trajectory. Methods: Semi-structured interviews were conducted with 19 patients. Data was analysed using grounded theory and the constant comparative method. Results: Four major themes were identified: (1) feelings of uncertainty around prognosis and quality of life; (2) the need for individualised information; (3) dependence on carers due to cognitive deficits, loss of balance and inability to drive; and (4) communication with health professionals around prognostic uncertainty and disease progression with communication barriers due to complex language deficits. Conclusion: Previous studies in HGG pre-date the current combined modality standard of care, or examined a mixed population. This study has found that patients with HGG have needs that differ from other patients with terminal malignancy and that these needs change over time with disease progression. Practice implications: This study has identified that patients with brain tumours may have unique needs. Health professionals need to clarify patients' information and support needs and be aware that these change over and within time. 2009 Journal Article http://hdl.handle.net/20.500.11937/19587 10.1016/j.pec.2009.08.013 Elsevier fulltext
spellingShingle Patient perspective
Information and support needs
Oncology
High Grade Glioma
Halkett, Georgia
Lobb, Elizabeth
Oldham, Lynn
Nowak, A.
The information and support needs of patients diagnosed with High Grade Glioma
title The information and support needs of patients diagnosed with High Grade Glioma
title_full The information and support needs of patients diagnosed with High Grade Glioma
title_fullStr The information and support needs of patients diagnosed with High Grade Glioma
title_full_unstemmed The information and support needs of patients diagnosed with High Grade Glioma
title_short The information and support needs of patients diagnosed with High Grade Glioma
title_sort information and support needs of patients diagnosed with high grade glioma
topic Patient perspective
Information and support needs
Oncology
High Grade Glioma
url http://hdl.handle.net/20.500.11937/19587