Dataset Information

Quality of online self-management resources for adults living with primary brain cancer, and their carers: a systematic environmental scan.

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.

SUBMITTER: Schaefer I

PROVIDER: S-EPMC7827995 | biostudies-literature | 2021 Jan

REPOSITORIES: biostudies-literature

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Publications

Quality of online self-management resources for adults living with primary brain cancer, and their carers: a systematic environmental scan.

Schaefer Isabelle I Heneka Nicole N Luckett Tim T Agar Meera R MR Chambers Suzanne K SK Currow David C DC Halkett Georgia G Disalvo Domenica D Amgarth-Duff Ingrid I Anderiesz Cleola C Phillips Jane L JL

BMC palliative care 20210123 1

<h4>Background</h4>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.<h4>Method</h4>A systematic environmental scan of web-based resources. A depersonalised search for online English-language ...[more]

PMID: 33485331

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Project description:BackgroundQuality improvement is attracting the attention of the primary health care system as a means by which to achieve higher quality patient care. Ontario, Canada has demonstrated leadership in terms of its improvement in healthcare, but the province lacks a structured framework by which it can consistently evaluate its quality improvement initiatives specific to the primary healthcare system. The intent of this research was to complete an environmental scan and capacity map of quality improvement activities being built in and by the primary healthcare sector (QI-PHC) in Ontario as a first step to developing a coordinated and sustainable framework of primary healthcare for the province.MethodsData were collected between January and July 2011 in collaboration with an advisory group of stakeholder representatives and quality improvement leaders in primary health care. Twenty participants were interviewed by telephone, followed by review of relevant websites and documents identified in the interviews. Data were systematically examined using Framework Analysis augmented by Prior's approach to document analysis in an iterative process.ResultsThe environmental scan identified many activities (n=43) designed to strategically build QI-PHC capacity, identify promising QI-PHC practices and outcomes, scale up quality improvement-informed primary healthcare practice changes, and make quality improvement a core organizational strategy in health care delivery, which were grouped into clusters. Cluster 1 was composed of initiatives in the form of on-going programs that deliberately incorporated long-term quality improvement capacity building through province-wide reach. Cluster 2 represented activities that were time-limited (research, pilot, or demonstration projects) with the primary aim of research production. The activities of most primary health care practitioners, managers, stakeholder organizations and researchers involved in this scan demonstrated a shared vision of QI-PHC in Ontario. However, this vision was not necessarily collaboratively developed nor were activities necessarily strategically linked.ConclusionsWithin the scope of this research, the scan affirmed that there is currently no province-wide, integrated, and measured quality improvement program for the primary healthcare sector in Ontario. This could be improved by the development of a coordinated plan, an accompanying accountability framework, and an appropriate sustainable funding envelope for QI-PHC at the provincial level.

Dataset Information

Quality of online self-management resources for adults living with primary brain cancer, and their carers: a systematic environmental scan.

Background

Method

Results

Conclusions

Publications

Quality of online self-management resources for adults living with primary brain cancer, and their carers: a systematic environmental scan.

Similar Datasets

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