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dc.contributor.authorSchaefer, I.
dc.contributor.authorHeneka, N.
dc.contributor.authorLuckett, T.
dc.contributor.authorAgar, M.R.
dc.contributor.authorChambers, S.K.
dc.contributor.authorCurrow, D.C.
dc.contributor.authorHalkett, Georgia
dc.contributor.authorDisalvo, D.
dc.contributor.authorAmgarth-Duff, I.
dc.contributor.authorAnderiesz, C.
dc.contributor.authorPhillips, J.L.
dc.identifier.citationSchaefer, I. and Heneka, N. and Luckett, T. and Agar, M.R. and Chambers, S.K. and Currow, D.C. and Halkett, G. et al. 2021. Quality of online self-management resources for adults living with primary brain cancer, and their carers: a systematic environmental scan. BMC Palliative Care. 20 (1): Article No. 22.

Background: A primary brain cancer diagnosis is a distressing, life changing event. It adversely affects the quality of life for the person living with brain cancer and their families (‘carers’). Timely access to evidence-based information is critical to enabling people living with brain cancer, and their carers, to self-manage the devastating impacts of this disease.

Method: A systematic environmental scan of web-based resources. A depersonalised search for online English-language resources published from 2009 to December 2019 and designed for adults (> 25 years of age), living with primary brain cancer, was undertaken using the Google search engine. The online information was classified according to: 1) the step on the cancer care continuum; 2) self-management domains (PRISMS taxonomy); 3) basic information disclosure (Silberg criteria); 4) independent quality verification (HonCode); 5) reliability of disease and treatment information (DISCERN Sections 1 and 2); and readability (Flesch-Kincaid reading grade).

Results: A total of 119 online resources were identified, most originating in England (n = 49); Australia (n = 27); or the USA (n = 27). The majority of resources related to active treatment (n = 76), without addressing recurrence (n = 3), survivorship (n = 1) or palliative care needs (n = 13). Few online resources directly provided self-management advice for adults living with brain cancer or their carers. Just over a fifth (n = 26, 22%) were underpinned by verifiable evidence. Only one quarter of organisations producing resources were HonCode certified (n = 9, 24%). The median resource reliability as measured by Section 1, DISCERN tool, was 56%. A median of 8.8 years of education was required to understand these online resources.

Conclusions: More targeted online information is needed to provide people affected by brain cancer with practical self-management advice. Resources need to better address patient and carer needs related to: rehabilitation, managing behavioural changes, survivorship and living with uncertainty; recurrence; and transition to palliative care. Developing online resources that don’t require a high level of literacy and/or cognition are also required.

dc.subjectBrain neoplasms
dc.subjectConsumer health information
dc.subjectBrain Neoplasms
dc.subjectQuality of Life
dc.subjectReproducibility of Results
dc.titleQuality of online self-management resources for adults living with primary brain cancer, and their carers: a systematic environmental scan
dc.typeJournal Article
dcterms.source.titleBMC Palliative Care

© The Author(s). 2021 Published in BMC Palliative Care. This article is published under the Open Access publishing model and distributed under the terms of the Creative Commons Attribution License Please refer to the licence to obtain terms for any further reuse or distribution of this work.

curtin.departmentCurtin School of Nursing
curtin.accessStatusOpen access
curtin.facultyFaculty of Health Sciences
curtin.contributor.orcidHalkett, Georgia [0000-0003-4065-4044]
curtin.contributor.scopusauthoridHalkett, Georgia [8909188900]

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