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Titre : | The feasibility of a brain tumour website (2015) |
Auteurs : | K. Piil ; J. Jakobsen ; M. Juhler |
Type de document : | Article |
Dans : | European Journal of Oncology Nursing (Vol. 19, n° 6, Décember 2015) |
Article en page(s) : | p. 686-693 |
Langues: | Anglais |
Descripteurs : |
HE Vinci Conception de site WEB ; Gliome ; Information ; Oncologie médicale ; Recherche ; Sécurité ; Soignants ; Technologie ; Tumeurs du cerveau |
Résumé : |
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 |
Disponible en ligne : | Non |
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