TY - JOUR

T1 - The feasibility of a brain tumour website

AU - Piil, K

AU - Jakobsen, J

AU - Juhler, M

AU - Jarden, M

N1 - Copyright © 2015 The Authors. Published by Elsevier Ltd.. All rights reserved.

PY - 2015/12

Y1 - 2015/12

N2 - PURPOSE: Patients with a high-grade glioma (HGG) and their caregivers have imminent and changing informational and supportive care needs. The purpose of this study was to investigate the feasibility and safety of a Danish brain tumour website (BTW) in patients with HGG and their caregivers. We hypothesized that the BTW would be feasible, safe, helpful and convenient for individuals to obtain support and information.METHODS: This is an exploratory, prospective six-month feasibility study. Two separate samples were collected: 1) a nationwide sample consisting of BTW visitors over a six-month period and 2) a sample of patients with HGG (n = 9) and their caregivers (n = 8) interviewed three months after being introduced to the BTW.RESULTS: The BTW was accessed from 131 different Danish towns and cities, and from ten different countries. The website had 637 unique users. The interviews identified one overarching theme 'challenges and barriers'. Being newly diagnosed, patients described a chaotic and overwhelming life situation and had difficulties in identifying with their new and changed role. When using the BTW, some patients and caregivers experienced technological challenges, while the former also experienced cognitive difficulties. Caregivers greatly appreciated that the BTW was available and that easily accessible specialists could answer their questions.CONCLUSION: The BTW attracted nationwide interest and activity, but the burden of being newly diagnosed with HGG combined with a low level of internet skills and cognitive deficits were barriers to participation.TRIAL REGISTRATION NUMBER: ISRCTN22038059.

AB - PURPOSE: Patients with a high-grade glioma (HGG) and their caregivers have imminent and changing informational and supportive care needs. The purpose of this study was to investigate the feasibility and safety of a Danish brain tumour website (BTW) in patients with HGG and their caregivers. We hypothesized that the BTW would be feasible, safe, helpful and convenient for individuals to obtain support and information.METHODS: This is an exploratory, prospective six-month feasibility study. Two separate samples were collected: 1) a nationwide sample consisting of BTW visitors over a six-month period and 2) a sample of patients with HGG (n = 9) and their caregivers (n = 8) interviewed three months after being introduced to the BTW.RESULTS: The BTW was accessed from 131 different Danish towns and cities, and from ten different countries. The website had 637 unique users. The interviews identified one overarching theme 'challenges and barriers'. Being newly diagnosed, patients described a chaotic and overwhelming life situation and had difficulties in identifying with their new and changed role. When using the BTW, some patients and caregivers experienced technological challenges, while the former also experienced cognitive difficulties. Caregivers greatly appreciated that the BTW was available and that easily accessible specialists could answer their questions.CONCLUSION: The BTW attracted nationwide interest and activity, but the burden of being newly diagnosed with HGG combined with a low level of internet skills and cognitive deficits were barriers to participation.TRIAL REGISTRATION NUMBER: ISRCTN22038059.

U2 - 10.1016/j.ejon.2015.05.001

DO - 10.1016/j.ejon.2015.05.001

M3 - Journal article

C2 - 26051074

VL - 19

SP - 686

EP - 693

JO - European Journal of Oncology Nursing

JF - European Journal of Oncology Nursing

SN - 1462-3889

IS - 6

ER -