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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.date.accessioned2021-11-29T05:39:31Z
dc.date.available2021-11-29T05:39:31Z
dc.date.issued2021
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.
dc.identifier.urihttp://hdl.handle.net/20.500.11937/86666
dc.identifier.doi10.1186/s12904-021-00715-4
dc.description.abstract

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.languageeng
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/
dc.subjectBrain neoplasms
dc.subjectCancer
dc.subjectConsumer health information
dc.subjectOnline
dc.subjectSelf-management
dc.subjectAdult
dc.subjectBrain Neoplasms
dc.subjectCaregivers
dc.subjectHumans
dc.subjectInternet
dc.subjectQuality of Life
dc.subjectReproducibility of Results
dc.subjectSelf-Management
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.volume20
dcterms.source.number1
dcterms.source.startPage22
dcterms.source.issn1472-684X
dcterms.source.titleBMC Palliative Care
dc.date.updated2021-11-29T05:39:28Z
curtin.note

© 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 http://creativecommons.org/licenses/by/4.0/. 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]
dcterms.source.eissn1472-684X
curtin.contributor.scopusauthoridHalkett, Georgia [8909188900]


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