OBJECTIVE: To understand factors influencing the process of adjustment to a diagnosis of glioma. METHODS: Twenty-six patients and 23 relatives took part in 80 in-depth qualitative interviews conducted at five key stages: before formal diagnosis, at start of treatment, on completion of treatment, 6 months post treatment, and post bereavement. RESULTS: High levels of distress were reported, particularly preceding and following diagnosis. Many participants described lack of specific information in the early part of their illness and a lack of clarity about what was wrong and what was going to happen next. They often desired more procedural information, as well as information about their condition and treatments available, although there was variation in the timing of when people were ready to hear this. Receiving reassurance and support was essential to patients and their relatives to help them come to terms with their illness. This need was particularly acute during the early phase of the illness when distress and uncertainty were at a peak and lessened over time as people adjusted to their illness. CONCLUSIONS: Offering suitable information about what to expect early and frequently in a supportive way is much appreciated by patients. There is an important balance between ensuring that patients and their families are fully informed and fostering adaptive coping that allows for hope.
OBJECTIVE: To understand factors influencing the process of adjustment to a diagnosis of glioma. METHODS: Twenty-six patients and 23 relatives took part in 80 in-depth qualitative interviews conducted at five key stages: before formal diagnosis, at start of treatment, on completion of treatment, 6 months post treatment, and post bereavement. RESULTS: High levels of distress were reported, particularly preceding and following diagnosis. Many participants described lack of specific information in the early part of their illness and a lack of clarity about what was wrong and what was going to happen next. They often desired more procedural information, as well as information about their condition and treatments available, although there was variation in the timing of when people were ready to hear this. Receiving reassurance and support was essential to patients and their relatives to help them come to terms with their illness. This need was particularly acute during the early phase of the illness when distress and uncertainty were at a peak and lessened over time as people adjusted to their illness. CONCLUSIONS: Offering suitable information about what to expect early and frequently in a supportive way is much appreciated by patients. There is an important balance between ensuring that patients and their families are fully informed and fostering adaptive coping that allows for hope.
Authors: Eefje M Sizoo; Linda Dirven; Jaap C Reijneveld; Tjeerd J Postma; Jan J Heimans; Luc Deliens; H Roeline W Pasman; Martin J B Taphoorn Journal: J Neurooncol Date: 2013-10-29 Impact factor: 4.130
Authors: Christiane Reinert; Katharina Rathberger; Monika Klinkhammer-Schalke; Oliver Kölbl; Martin Proescholdt; Markus J Riemenschneider; Gerhard Schuierer; Markus Hutterer; Michael Gerken; Peter Hau Journal: J Neurooncol Date: 2018-03-07 Impact factor: 4.130
Authors: Eefje M Sizoo; H Roeline W Pasman; Linda Dirven; Christine Marosi; Wolfgang Grisold; Günther Stockhammer; Jonas Egeter; Robin Grant; Susan Chang; Jan J Heimans; Luc Deliens; Jaap C Reijneveld; Martin J B Taphoorn Journal: Support Care Cancer Date: 2013-12-14 Impact factor: 3.603
Authors: K Baumstarck; T Leroy; Z Hamidou; E Tabouret; P Farina; M Barrié; C Campello; G Petrirena; O Chinot; P Auquier Journal: J Neurooncol Date: 2016-06-14 Impact factor: 4.130